Welcome to the family journal that captures the chaos that is the world of Colleen, Adam, Zach, Ben, Josh, Luke, Tommy, and Ruby. Here you will see small snippets of what we see every day.
About two months ago I saw that Copper Mountain had its 4-pack of tickets for less than it usually costs to buy three deal back on again (a deal we missed out on at the beginning of the season because we hummed and hawed about buying them for too long!). The tickets were transferable, meaning I could use them, Adam could, or we could sell them if we never got around to using all 4 tickets, or more than one of us could use them on any ski day. Copper Mountain is a good deal larger than Monarch, and located up near all the other "big name" resorts, like Vail and Brekenridge, so you know the skiing has got to be good. So I snatched up the deal! Well, the weekends went by, all of them too full of activities that Zac or Adam or I had to be at, and we never got around to using them. With our California plans for Spring Break decided against, we thought it would be perfect to use them all during the week off of school.
On Tuesday Adam and Zac drove up to Copper Mountain and spent a great day of spring skiing. It has been downright summery here in Colorado, so the skiing is very springish--icy in the mornings, slushy in the afternoons, you almost don't need a jacket it is so warm. In fact, Zac reported seeing several teens not even wearing shirts! The snow on the slopes...well, it reminded me of Washington snow, like Grape Nuts! Adam and Zac got a hotel Tuesday night in Frisco, and then spent Wednesday on the mountain again. Aside from Zac's bindings coming off of his boots twice in one day, it was a great two days. Apparently snowboarders are supposed to tighten up all their screws and bolts on their bindings at the start of every day, because they can loosen up over the course of a day. Ahh, well, now we know. It was such a fun father-son getaway for both Adam and Zac, although they were totally tired by Wednesday night and ready for a day off.
Wednesday Adam and Zac called me from Adam's phone and we Skyped while they were on the mountain. I got to watch Zac skiing down the hill...LIVE...from the comfort of my own couch! It's pretty incredible to think of how far technology has brought us just in my adult life, and a few moments of Skyping with your skiing son and his father sure drives that message home! It was very cool.
However, it made me really eager to go skiing too! I had kind of gotten myself psyched up for it when Adam injured his ankle, but then, with some TLC and quick healing, my services were no longer needed. We still had two tickets of the 4-pack left, so I asked a friend if she would be willing to watch our three littlest boys all day Friday. It would be a long day, but she has kids all of my younger boys' ages and we watched her 4-year-old son for a weekend while she went away for her birthday with her hubby, so I thought she'd be my best bet to ask. Fortunately, she was game. Ben went to another friend's house for the day. We were good to go! I was excited...and a lot nervous. I haven't skied since BEFORE Adam and I were married; it's been over 14 years, and really, it's been only a few times since I was 16.
It was so fantastic! What a day! It's amazing how your muscles remember what to do. I skied a lot during middle and early high school, taking the Ski School bus up to Snoqualmie Pass and then Stevens Pass every weekend during the winter. But I couldn't believe, after all these years, how it all just came back to me, like I hadn't spent a single winter off skis. The day was beautiful. The mountains were beautiful. It felt like we were skiing on top of the world, and at 12,313 feet, we practically were. I had such a great time!
We went up with Adam's boss, Anne, who had come into town on Thursday to lead a training with Adam. We were excited to have her join us for a ski day, she's a great lady! We also met up with our friends Jason, Cory and Joel Puckett who were staying up in Frisco for a long weekend of skiing. We started off the day with a few green circle runs to warm up. After lunch the rest of the group left Zac and I to try some moguls and double black diamond slopes, and Zac and I went to find some blue square hills...just for a little challenge. After two runs, Zac told me he wanted to try a black diamond hill before the day was over. I don't know if it was a desire to show off a bit for Mom, or maybe it was peer pressure from having his skiing buddies with him, or maybe he just knew it was our last trip up for the season and there wouldn't be another chance, whatever it was, I am so glad he wanted to try. He was ready! I had no doubt he'd be fine. He was shredding up the blue squares! I hadn't seen him fall down once yet that day.
We called up to the other skiers, who were coming down a mogul-packed black diamond called Hallelujah, and asked for some advice on which hill would be a good "starter" black diamond. The Pucketts are Copper Mountain regulars and would know which would be best. They met us at a slope called CDL's Trail #20. Zac went down it easy peasy, no problem! He only fell once (and was surprised to find that he had slid 20 feet down the slope after his fall because of the steepness) on his first time down. He had so much fun, he did CDL's twice more, no falls at all. We tried a different black diamond, Rosie's Run, and Zac rocked that too. It's amazing how good he is for only 5 times up! We finished the day off with one more run down CDL's and then headed home. We were all happily exhausted. On the way out of the resort we stopped by one of the gear shops. Our friend's, the Pucketts, have a tradition of buying their son a shirt from the resort where they did their first black diamond. We liked that idea--and we especially liked that they were having an end-of-season sale! Zac happily donned his black Copper Mountain sweatshirt...black to represent "black diamond." There was one thing I sure hadn't forgotten in my 14+ years off the slopes...how good it feels to take those danged boots off at the end of the day!
When Zac and I were skiing alone we were talking about how fun the sport is. He said that the first couple of times he went up, he was surprised at how many kids there were skiing or snowboarding, I guess he thought it was a sport mostly for adults. I told him that in some families that's just their thing, like the Pucketts. He said, "I wish it were our family's thing!" After my debut return to skiing, I wish it were too! Next season Adam is going to have to arm wrestle me over who gets to be the one to take Zac up!
Prologue (a post this long deserves one!): I don't usually talk about this a lot, because I don't want it to be something that defines Zac. Don't misunderstand me, I don't mind talking about it, because it doesn't bother me to talk about it, but if people don't notice, then I am not going to bring it up with them unless there is a reason that might make them knowing necessary. I feel sometimes that giving labels to kids makes people treat them differently, especially when it's a label that says "this kid is not like other kids" in some way. The label makes people uncomfortable with the kid so they either become hyper-sensitive or pretend like they don't notice at all. I'm not trying to be difficult, I realize that one way or the other is the way people are trying to be sensitive to the situation or cope with the information themselves. It doesn't make me mad or even irritated, I realize that is just how people are, but that is why I don't mention it much, so the label isn't there at all and no one has to be uncomfortable. The only people who seem to really know how to act are those that have a kid who also has also been "labeled" by something or they are a person who really knows the kid, or wants to get to know them, and then, as the kid becomes a real, valuable person in their eyes, the labels don't matter. Fortunately I am the parent of a kid who has a label that is pretty subtle, but there are plenty of parents out there who must mention the label and deal with the awkwardness that follows because it's obvious. Anyhow, there are few readers of this blog anymore (Mom, I think, sometimes Adam, and Jen, who never gives up checking, even if I haven't posted for awhile :)...and then there are those who don't have a choice because I email the posts to them...buahahahahaha!); those that read it I think are mostly aware and adore Zac, so I thought I would be safe in getting this recorded for our own history.
And now we begin....
We first noticed something amiss the summer when Zac was five, before starting kindergarten. I will never forget that day. It was one of those days where, in an instant, you experience something that you are sure made your heart stop beating for a full minute, you had a rush of adrenaline that moved from your heart out to the tips of your fingers and you know something is really wrong, that your life was about to change in some significant way.
We were outside in the backyard of our new house in Everett. It was Father's Day, and both families were there to celebrate the dads, Adam, Dan and Stan. It was one of those glorious June-in-Seattle days--one of the best-kept secrets of "rainy" Washington weather. That's when I noticed it. Zac, our sweet, happy, laid-back, best-big-brother-ever Zac, was doing something extremely odd with his face, like he was making a silly face at something, but to the extreme, and I could tell he had no idea he was doing it. That was my heart-stopping moment. I quietly tapped Adam's shoulder to point it out to him and asked if he was seeing what I was seeing. I needed to make sure I wasn't going crazy. I wasn't. He noticed it too. I grabbed our camera and took a short video clip and then we just watched and waited for a bit. After about an hour he seemed to stop.
I called the pediatrician's office at exactly 8:00am the next morning, opening time, to get the first available appointment for Zac. The doctor did his best to reassure us, but we left the office with an appointment for an MRI of Zac's brain, and there is little reassurance in that. By the end of the week, and a stellar session for a 5-year-old in the "rocket ship to Mars" a.k.a. the MRI machine, we knew that Zac didn't have a tumor, there was a lot of reassurance in that. We were then referred to a neurologist, Dr. Valcek, at the Children's Hospital of Seattle.
We waited a long, impatient two weeks to see the pediatric neurologist. But the appointment was quick. It was quickly very clear to Dr. Valcek that Zac had an "unspecified tic disorder" (meaning there was no real reason/solution for his tics, and it was too early to tell if he had Tourette's). Treatment, which isn't always very helpful anyway and can have adverse side effects, was not really necessary for someone with Zac's minor tics. We were all fine with that. Zac didn't care at all. There was a chance the tics could get worse, there was a chance they'd stay the same, and there was a chance they could go away. The time we were most likely to see changes would be in early adolescence. That was about it. We were to return for check-ups every 6 months.
We talked to Zac a lot in those early months, about how everyone has something that makes them unique, and his tic one of those things for him. We helped him come up with some good responses for friends (or bullies) who might ask him about it and really did our best to help him be comfortable with the fact that it was just a part of who he was and we thought he was fantastic. Thankfully Zac is and has always been a kid who is comfortable with who he is. He is not out to please others. He does want to have friends and be included, but he wants the good kind of friends, not the ones who don't like you for the right reasons. He knows he is loved deeply at home and can always find safety and comfort here.
We did go back to one re-check with Dr. Valcek, but then we moved. There didn't seem to be a huge urgency to get Zac in for a re-check over the years we've lived here. Zac's wasn't too bothered by his tics and very few people noticed them; the tics weren't going away, but they weren't getting worse and time just passed....
Zac's tics are mild. Every year I've mentioned his "unspecified tic disorder" to his teachers, just so they don't think he's being rude in class if a tic pops up and they happen to notice it, and every year at October conferences his teachers say that they are glad I mentioned it, but they may not have even noticed the tics if I hadn't done so. He only had one teacher that seemed uncomfortable with them, but mostly it was because I don't think she knew what she was supposed to do with the information so she was a little hyper-vigilant. Friends I've talked to about the tics, usually only friends who I've known and who have known Zac for a long time, are always surprised to hear he has them, never having noticed them before. They are pretty unnoticeable unless you are looking for them, but once you know he has them, they are hard to not notice. Few classmates have ever asked him about them or pointed them out.
Zac's tic is transient. He has two that come and go, and usually he doesn't do them at the same time. One is a small, brief hum in the back of his throat, it's quiet and we can usually only hear it when the room is quiet, like when we are watching a movie (or in a classroom where kids are working, which is why I make sure to mention it to teachers). The other is a shoulder shrug/head bob. He hasn't had the facial tic since the first day we noticed them.
Zac's tic fluctuates in intensity. His vocal tic doesn't get louder or change, but his physical tic does. Sometimes he barely has it at all, like it's almost gone and we don't notice it. Other times it is bigger, more frequent and more obvious, although still small enough that someone else might not notice it. Usually they are bigger when Zac is stressed, like during busy phases in our calendar year, or when he's in relax mode, like watching the TV. We also notice it more when he hasn't been getting good sleep. When they are bigger, they can bug him enough that it takes him longer to fall asleep.
A few months ago I decided it was time to see a neurologist again. Zac will quickly be entering early puberty, and the other neurologist told us that this could be a time when we see changes. I thought it would be good just to have a specialist here who knew Zac and his case, just in case...of what, I don't know...but just in case. This week, after four months of waiting (specialists! sheesh!), we visited with Dr. Grabert. He was SO great. Neurologists, being pretty cerebral guys and gals, can be lacking a bit of bedside manner. Dr. Valcek, while nice, had a hard time relaying understandable information to us non-medical folk. Although I should say that Dr. Valcek was amazing at helping Zac realize that the tic was no big deal and just a part of him, not something that should make him feel like a weirdo or a freak. But we loved Dr. Grabert! He was a kid/parent-friendly, easy-to-understand doctor with a lot of good information, and also did a great job of making Zac feel totally normal.
Tourette's is a syndrome that is characterized by tics that last more than a year and that have both a physical and phonetic component (meaning a person who has both a bodily and vocal tic). Because Zac fits this profile, Dr. Grabert gave us the official diagnosis of Tourette's. This is something I already knewish, given the information we had from the specialist years ago, but I had pushed to the back of my mind. I think I wanted to ignore that possibility.
When most people think of Tourette's they think of what they've seen in movies or on TV: a person who randomly shouts out expletives. Fortunately, this is not Zac, in fact, that is a condition suffered by a very, very small percentage of people with Tourette's, and of those that do shout out words, the ones who shout expletives are even a smaller portion. While I am grateful that Zac does not fall into that percentage, he still shares a commonality with the kids who do and it makes the mama bear come out in me: these are just a normal kids who have a challenge to deal with, everyone has something they've got to deal with, theirs is just out in the open for everyone to see; they want to be liked for who they are; they want people to know they are just like everyone else inside, their feelings and emotions are the same; they are valuable and matter and Tourette's does not define them.
The bigger concerns with Tourette's are the companion conditions that many people with Tourette's also have: Autism, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder. Zac doesn't have any of these. He does have a hard time sitting still in school, but it doesn't affect his work, his attention is not affected. He is a great and very intelligent student, and most of his teachers, when he just needs to stand up and shift around a little, have simply allowed him to sit at a desk in the back, where standing up won't bother anyone. A friend of mine this week suggested giving him a bungee cord that he can string from one side of his desk to the other so he can bounce his feet on it. I like it! But even with his fidgety nature, ultimately Zac does not have any of the companion conditions. We actually joked that we would love it if he were a little more OCD about turning off lights, checking locks or washing his hands (some of the most common OCD behaviors seen in kids Zac's age).
Dr. Grabert told us with the mild nature of Zac's tics and this lack of companion disorders his prognosis is very good. Tics appear around 5-years-old and seem to peak between 10 and 12, and Zac is on his way to 12 and his tics have not become worse over the years since his diagnosis, and more significantly not in the past couple of years. Twenty-five percent of people will outgrow their tics in their teens, 50% will remain that same and 25% can get worse, but Dr. Grabert's feeling is that Zac will not fall into that 25% who get worse because we'd already be seeing signs of that now, an increase in symptoms. For Zac's sake, that was a relief. They are not a big deal now, so if he falls into the 50%, who cares? If they go away, fantastic. If they get worse, it would be a hard road to walk for him, and no parent wants to see their child have to struggle in a world that is difficult enough without a big, obvious disability. Although, I know he could handle it with class, and we will always be here to help him pick himself up and cheer him on.
I thought it would be hard to hear that the diagnosis was officially Tourette's, but it hasn't been hard at all. It doesn't change anything about what Zac has to deal with, who he is, or the nature of his tics. It's just a word. They are what they are with or without the label. And it's nice to give Zac's condition a name, just to make explaining easier, although I will have to clarify that he will not be shouting out random bad words all the time to ignorant people. It has also opened up a lot of researching over the past few days that has really helped me understand better how Zac is feeling inside, what the tics feel like and how the tics make him feel. I've attached a little clip from a documentary done by HBO of some incredibly brave kids talking about having Tourette's. The title of the documentary is "I Have Tourette's But Tourette's Doesn't Have Me" hence the title of the post. I haven't seen the whole thing because we don't have HBO and I can't seem to find a way to get the movie anywhere that is going to cost me less than $60. But when I watched the clip with Zac and one of the kids talks about what it feels like to try not to tic, Zac gave a little chuckle and said, "That is SO true." I felt enlightened but also awful. We've asked him to try to control them before, especially when we are watching a movie together. Geez, Mom! But it's good to be learning.
Bottom line, Zac is amazing. It astounds me that he is so comfortable with himself; I know few adults who are as comfortable with and confident in who they are as he is. I hope he can always stay that way. He said he's had a few kids notice the tic and a handful have asked him about it, like, "What are you doing Zac?" and he just he just tells them, "I just have a little tic, it's just part of who I am and it's no big deal." My boy is awesome.
...for dead brown grass everywhere and tons of static electricity! Welcome to spring in Colorado.
I think there is as much dead grass in my home at the end of every sunny/windy day as there is outside, brought in by busy boys who are in-and-out every 4 minutes and a dog who loves to roll in it. Thank goodness for a new vacuum! Although with the static, there are always several pieces of grass that the vacuum misses, tenaciously clinging to life on the sides of the couch, the blankets and even the kitchen stools, laughing their evil "you-missed-me" laughs.
Wednesday night, Adam sprained his ankle during his usual Wednesday night stake basketball gathering. It's rarely for a good reason (like desiring to go to bed early) that he returns home before 11:00pm on these basketball nights, so when I heard the garage door opening at 10:15, I knew that either too many people had shown up so the chance he had to play again before midnight was slim, or he had been injured. As he limped into the house the reason was clear. Dang it!
The first night the pain in his ankle was pretty awful, but since then, with a lot of icing, ibuprofen and elevation the first couple of days, a snugly wrapped ace bandage and a borrowed pair of crutches for when he has to really get around, the discomfort is down to an ache today. I am so glad it seems like he is healing quickly.
But there is still plenty of "pain" to go around. It's still a pretty big "pain" to have my comrade in parenthood only able to function at 30-70%, depending on the task. Adam thought it was a huge "pain" to miss out on skiing with Zac last Friday when the kids were out of school; and depending on how healed he is over spring break next week, it's likely he will feel the "pain" of missing out on more ski days (although that means I get to go in his place, which isn't too big of a "pain" for me!). It's a "pain" to have to be on crutches and not be able to get around like he wants to. And it's a literal pain to try and drive a clutch with an injured left foot!
I am trying to encourage him to take up a nice, easy non-contact sport, like table tennis or curling. I don't think I'm going to win this one. Adam does have one comfort in all this pain. He still made the basket on the play that took out his ankle. :)
A week ago (I can't believe it's already been a week!) Josh, along with the students of all four first grade classes at our school, performed in a short production of The Sky is Falling, a.k.a the story of Chicken Licken. When Zac and Ben were in first grade they performed TheThree Piggy Opera, which was fun, but it was nice to be treated to something new!
The show was funny and sweet, the kids were just darling delivering their lines and singing their songs, and Josh was incredibly cute. He played one of Foxy Loxy's cronies, the trash-can tossin', lip lickin', hopeful for a Chicken Licken lunch Fox #3. One of my favorite elements of the play were the masks that kids all made during art to help set the scene for a magical forest (I adore our art teacher!). Josh was dressed up as a fox, and only the chorus kids had their masks, so we didn't see his until after the show was over, but boy were they cool, each one unique and lovely! Aside from my sweet Fox #3, I also loved the little forest fairy dancers. Josh looked great all foxed-up in his costume and delivered his lines quickly but perfectly! He, along with Fox #2 and Foxy Loxy, stole the show...but that is just my {completely biased} opinion! :)
Things with Luke have been a little (or a lot!) difficult lately. I don't know what caused the downward spiral. I rarely do know what it is that sets his progress backward. With Luke, life can sometimes feel a little like an unlucky game of Chutes and Ladders. After months of slow progress, plodding upward square after square, greatly celebrating the very few ladders we happen to land on, while lamenting our slides down several short chutes, we find we've rolled just the wrong number on the dice and landed smack dab on square 87-- it's the one that sends you rocketing down the long chute and there you are once again, square 24. There are days when I think, "This kid is SO ready for kindergarten and he is going to do great!" And other days when I wonder if we should send him to another year of preschool, or at least try kindergarten out at another school so that if we decide to have him repeat the grade, he can repeat with a whole new group of kids at our home school. Disheartening and irritating. Those are the words that describe how I've been feeling about where things are with Luke right now. Sometimes I can barely recognize the mother I am with him versus the mother I am with the other boys.
Last night, after a particularly bad evening, I realized I needed an attitude readjustment for myself and a new game plan for how I interact with Luke. I am starting by re-reading a book I read several years ago, when Ben was little, called Raising Your Spirited Child. It's contents were a distant memory for me, so reading the first few paragraphs in the prologue last night was like reading an excerpt from a week in my life. It was good, and now, a third of the way through it, I feel like I am getting some useful ideas and a good perspective check-up.
I also reassessed how the hours of the day are spent with him. Adam and I always joke that Luke would have made a great only-child. He thrives under one-on-one attention and is generally pleasant to be around when he has your undivided attention. Whenever we have a visitor from out-of-town, he jumps all over the opportunity for some solo attention, and is usually a gem for most of the visit, relishing the moments spent curled in a Luke-ball on a relative's or friend's lap.
Unfortunately for Luke, he did not land himself in a one-child family. He's in a big, noisy, busy family and there isn't a lot we can do about that. But we can make extra effort for him to know that he is valued and not lost in the mix. The big boys get a lot of personal attention because they have so much they do that allows us to focus solely on them: watching soccer games, carpooling them here and there, helping with a school project, hanging out in the kitchen after school talking about the day or assisting in homework. Tommy, well, he's the baby and is still young enough that he needs and receives a lot of attention for that reason, and he's so fun to smoosh on with his sweet spunk and general cheerfulness. They all seem to be satisfied and know they are important to us. But Luke, who I think temperamentally actually craves a bit more solo attention than the other boys do, can get caught up in the busyness of the day, the shuffle of the to-do's, and end up feeling like he hasn't had enough. So I am working to fix that by planning some one-on-one, or two-on-one time including Tommy, doing things Luke likes to do and making sure a good deal of the focus is on him, into our mornings. It means less will get done, but I think there are often things I feel like I urgently need to do, but they are actually not as important as making sure Luke gets what he needs. The floors might be a little dirtier, but Luke will be happier.
I awoke today with a new determination and a plan in my head. Then the morning got off to a rough start. Luke woke up late, in spite of several attempts to get him up earlier, after a late night...daylight savings time strikes again! By 10:30am I had already sent Luke to his room because I couldn't take the whining anymore. Even though I was already ticked-off, I swallowed my annoyance and decided to put my plan into action. I forwent my need for a shower following my morning treadmill run and called Luke back downstairs. Then Luke, Tommy and I set about making some playdough. We added ingredients to the big cooking pot, stirred it all together and then kneaded the stickiness out. The boys chose to make a rainbow of colors, coloring our hands in the process and laughing about our blue palms and pink fingertips. We used cookie cutters and made a pink rhino, a green monkey, an orange camel and an entire zoo of colorful animals. Luke made Batman and the Joker, who decided to stop fighting for a bit and take a visit to the zoo. It was so calming and peaceful and full of laughter. After a nice early warning that clean-up time and lunch were looming, Luke happily helped me put the playdough into bags, ate a nice big lunch, and chattered joyfully all the way to his preschool drop-off. When I picked him up, his teachers told me he had had a great day. It felt so good.
I know it's still a long road and my patience will be tried. But as I type this I feel a little healed, like our relationship is mending. And with a kid like Luke you've got to celebrate the victories, you've got to cheer when you get to climb a ladder, even if it's only allowing you to skip ahead four spaces. That is what our playdough time this morning was, a nice tiny climb up a ladder. With 70 as the high temperature tomorrow, I think we will take a walk in the open space with Ruby before school and see if we can find some early-spring bugs. The floors can wait.
As of a week ago Saturday, when Zac's team, United '01, played three games and got sunburnt in the Sunbelt Soccer Tournament in Pueblo, and Ben's team, Rapids United, spent the day here in The Springs braving the 50mph wind gusts that were sending the tumbleweeds and Tommy flying along the field, soccer season is a GO for the Chaos. The peace and quiet was nice, but peace and quiet around here never lasts long!
