Battle

Tomorrow is Niko's IEP. Individual Education Plan, for those of you lucky enough not to deal with them. This is where we sit down with Niko's teachers, therapists, etc etc etc and basically do battle.

It shouldn't be battle, but it is. It's two hours of negotiating, of basically being told everything that is wrong with your child and brainstorming ways to help it. Can he climb stairs? Yes, so we're okay there. Does he still walk on his toes? Yes, so we need to work on this. Can he speak? No, so we need to do sign language. No, I don't want to do sign language, we already tried that. Ix-ne on the ign language-se. So how about picture exchange? I loathe picture exchange, but he is much more likely to do that than sign language. Are we all on board with picture exchange? Which pictures does he need? Who will provide the pictures? We need to do it the exact same way, so how shall we do it. On and on and on. It's very wearing.

I always dress for IEP. I don my armor. Tomorrow I will be wearing St. George slaying the dragon and my battle axe on a chain around my neck. I need to remember that I am Niko's voice. They have so many kids to worry about, and I am only concentrating on Niko, so I need to avoid being crushed in the machine.

This IEP will be different, though, because I need to discuss the way that things went down at school on Monday. I felt ambushed and unprepared for what they wanted to tell me, and springing it on me like that was not okay. Discussing it in front of my son was not okay. Niko was distressed when I broke, and that wouldn't have happened if I had received some warning. I want to handle this with an open mind and hopefully some grace, but they need to know that discrimination will not be tolerated. After the IEP, I am calling the school district.

I was so weary. I was so tired of constant disappointments and challenges, of all of these low things that are happening daily right now. I was exhausted by the appointments, the bad news with his broken leg, with the meds. It gets old to follow him around every day, trying to get him to eat something soft instead of dry-crunchy, trying to get him to dress himself and decipher what he's pointing at. I need a break. I'd sell my soul for a day at home without anybody here. But here's what I have decided.

Niko needs me. And really, that's all there is to it.

Update

Leg rebroken, reset, and recasted. No pins and no adverse reaction to the anesthesia. Niko is home, on Lortab, and we begin the six weeks of casting from square one. I'm very relieved that they didn't have to open him.

I have decided that today is a new day.

Sweet Child of Mine

So, when it rains, it....I'm too tired to finish the end of that sentence.

Niko has been doing really well, and we even flew to Boise for a family baptism. I was really hesitant about taking broken-legged boy on a trip, but it was good for all of us. He needed diversion and I needed a break. I also ran my first 5k, and have decided that it was a success. I couldn't run the whole thing, but I've been ill and have decided to be kind to myself. Even though there was a lot of walking involved, I am proud to have finished. It also renewed my dedication for my 10k in August. Along the Extraterrestrial Highway at midnight, btw. I'm going to run with a headlamp and googly antennas.

You know. As true aliens do.

We were excited to send Niko to school on Monday in his shiny new Super Wheelchair. I expect it to make Transformer noises as it changes from position to position. I called Transportation, and they sent a bus with a lift. We loaded Niko onto it and waved him off to school.

I get a call later from the nurse, saying that I have to pick up Niko. I am carless during the day, but thank heavens Dad was down and he drove me to the school. Then some kind of bizarre impromptu meeting occurred.

Niko's wheelchair didn't have a seatbelt, which constitutes as a safety issue. I'll definitely give them that! What five year old wants to sit down quietly? But suddenly it became a matter of: the doctor didn't send the correct note, and they didn't know exactly what his physical limitations were. Can he sit in his chair all day? "Yes," I said, but that was apparently the wrong answer. "Or you can lie him down on the floor, if that's easier," I said. But they can't LIFT him, they said, and it was like being tossed down the rabbit hole, where everything I said was being refuted. What IS this? The wheelchair is too big for the classroom, and it's bulky. It doesn't belly up to the table, and it doesn't have a tray. It isn't conducive to learning, and there are only a few more weeks of school left, so maybe I would just consider...

And suddenly I got it. I got it, and I would have understood it a million times faster if my mind wasn't mush from everything that has been going on. My child breaks his leg, and it is too hard to accommodate him at school?!

I'm standing there with Nina on my hip, and Niko gazing up at me from his wheelchair. I'm surrounded by three women who have always been so kind to my son, and I have to tell you that it felt like a betrayal. I thought a lot of things. I thought, "You want me to keep him home?" I thought, "Great, we just went through this at church!" and "If a typical child broke his leg, would you kick him out of school?" and a myriad of other things.

What I SAID was, "I am just so tired," and I started to cry. Score one point for The Nasty Cruel World, and zero points for Team Nikolai.

So we had an appointment with the doctor today, and I was going to get a note to explain EXACTLY what Niko could and couldn't do. I think the tears were a bit unnerving to them, and they definitely were to me. I am exhausted. I am sick. I'm seeing my own doctor tomorrow to see if my "little sugar problem" is going to be lifechanging or not. I am too weary to comprehend much right now. I don't know if I should run screaming to the district or if I'm somehow in the wrong. I have Niko's IEP on Friday (Oh joy) and I know that I'll definitely bring this up then.

Turns out that it really doesn't matter. Niko's bones have once again shifted inside of his cast, so in two hours we take him in for outpatient surgery. They'll cut the cast off, rebreak if necessary, rearrange, and possibly do pins. He won't be able to go to school anyway. What a relief for them.

My friends have been wonderful. One called our names in to the temple roll, and another is searching for the school district's phone number. Meanwhile I'm fighitng to pre-register Niko at the hospital (they won't accept it online, I don't have a car to drive there, and they haven't answered their phone since noon today) and playing Sweet Child of Mine on Guitar Hero to entertain Niko. Wish us luck. Again.

A Question for the Williams Moms

Which is what I call you in my mind. The Williams Moms.

One of the most exasperating things about Niko being flat on his back is that he always SHOWED me what he needed. If he wanted peanut butter toast, he...well, I was going to say that he got the makings of peanut butter toast. But in actuality he would brandish a butter knife at me, and I knew that's what he wanted. Now he points vaguely in a direction and I'm all, "Would you like me to start the dryer? Would you like to see the newspaper? Please, for the love of humanity, start talking!!!"

When did your kids learn to talk? Five seems so late. I know that everything runs on its own timeline, but...but. That's all I have to say. But.

I believe he'll talk one day. He didn't learn to crawl until he was two, and we were so worried about it. And now that worry is just a memory for us. I'm hoping this will be the same way.

But.

Relief. Finally.

It couldn't have gone any better. The surgeon looked at Niko's x-rays and said that they were going to cast him. No surgery, no pins. No anesthesia, which is the bane of the Williams world. Luke and I looked at each other in shock. Was something finally going to go right?

It did. Niko's leg is encased in a Cookie Monster colored cast all the way up to mid thigh, and he is so much more comfortable! The bones had shifted inside of his splint, so they had to reset them, but now we don't have to worry about jostling him. Tomorrow they're delivering a foldable wheelchair, and then life will change for my little son.

Nina is so sweet, wearing a yellow party dress and clapping happily. With Niko out of commission, it is her time to shine, and shine she does. I've been trying to find the good in this, and I think that maybe it forced me to slow down. Things have been so busy and we were all worn out. I hadn't been spending much time with my family at all, and the kids and I have been lying side by side since Thursday night. If nothing else, I had a chance to reconnect with them.

That said, we're incredibly bored. Niko is currently watching the balloons spin around under the ceiling fan, and it is making him laugh. I recorded it and emailed it to my parents. And look, my blog now has music! And the music is picked at RANDOM! It takes me a long time to figure out things like this. Technology isn't my forte. But hey, one thing that I certainly have right now is time. As long as it doesn't take me more than three feet away from Niko, because then he does that sad "Why are you leaving me?" cry. Showers are a too brief, wicked indulgence.

Anyway, thank you guys so much for your prayers. I absolutely believe in the power of prayer, and I know that it came into play here. You're so appreciated!

Beautiful Niko, Wake Unto Me

Tomorrow we see the surgeon, and then we'll know what's going on. I'm nervous, of course, but either option will be a step forward. Either his leg is set and he'll be casted, or he'll be scheduled for surgery. At least he'll have his foot in something more stable than a splint. I'd like to be able to move him around eventually, and take him outside. I think that would improve his quality of life.

On the lighter side, here is a picture of his birthday cake! The boy is OBSESSED with washers and dryers. Luke had a lot of fun with this one.

I'll write more after tomorrow's triumphant return.

Regarding Said Mass Email

Do I really feel as lighthearted and under control as I sounded in that email? No. Of course I don't. But those details aren't meant for everyone.

A Copy of Today's Mass Email

Hey, everybody! I just wanted to let all of you know that Niko turned five years old yesterday. Luke outdid himself with a washer and dryer cake (Yep, his cakes just get more and more grand) and Niko had a party starting at 7:00. I heard it was great, and that they even took a few pictures, but we missed out because Niko broke his leg while jumping on the trampoline. Right, the same trampoline that he spends hours jumping on every day! Apparently he just landed funny on the canvas, not on the springs or bar or anything. I heard him and walked outside to see our friend running to us with Niko in his arms, and Niko's leg was obviously broken. We had a brief comedy of errors running to the car, but made it to the emergency room in under ten minutes. Go us!

He broke his tibia and fibula right above his ankle, and it didn't realign as well as the doctors had hoped. We have an appointment on Monday with the orthopedic surgeon, and they'll most likely have to do surgery to pin his bones. We have x-rays for those who want to see them. But Niko's all right, and is watching Cookie Monster as we speak. He's such a good boy. Nina is having a grand ole time without Niko interfering in her fun. Big brothers can be such a drag sometimes.

Anyway, prayers would be appreciated. Niko is not the kind to lie flat on his back, so we're going to have a struggle on our hands. For those who are wondering, the 5k is off, and Boise is still in the air. I may or may not be out of town, depending on what the surgeon says. Anyway, we're well and Niko is drugged and contented. Good spirits here. Thanks!

You Are Not Wanted.

So yesterday everything came to a head. All of the constant running around, things going on every night and no time to decompress and be with my family. There was an incident at church, a small misunderstanding, really, but it made me feel ugly inside. I was hurt, and for a brief moment I hated, but then I took a breath and slowly worked on becoming me again.

I don't want to say too much, because I know sometimes my local friends read this blog. But at church yesterday, I was basically told that Niko was unwelcome to a place that he had always been welcome to. There are new people there now who don't know and understand him, and want him elsewhere because he's distracting. Which he IS, and I know it! And after thinking about it, I know that these decisions were made in the best interest of everybody. I wish I had been involved in the decision making, of course, so that I knew not to bring him to that room, but I know these decisions were not made out of unkindness. These are sweet people who are balancing a lot of responsibility, and are working tirelessly to do good things. I'm not angry anymore, and probably wouldn't have been angry at all if things had been communicated properly beforehand. Sometimes we just get too busy.

But as it was, I had the joy of standing in a room with my weeping child and being told, as gently as possible, that he was no longer welcome there, that he was too difficult to deal with. I was blindsided, and stood there in shock while Niko wrapped his arms around my neck and cried. And I cried, too. I cried twice in church, and then I came home and cried. Then my friend June called me, and I cried harder than I had cried in a long time, the kind of crying where you can't stop long enough to catch your breath. Then I cried when I went to bed, and today when somebody asked about it, and I'm crying now. This is what I have to say.

You touched on my greatest fear. I'm afraid when Niko plays on the playground with mean kids that knock him down. I'm afraid when little girls back away from him when he's screaming. I'm afraid when the kids poke him with sticks through the fence when he's playing in his own backyard. The phrases "You are not wanted" and "You don't belong here" and "You are too different" are the most cruel things that you can say to somebody, and they don't always need to be said with words. You are kind, wonderful people, and I'm sure that if I knew you, I'd really enjoy you. I know you have to worry about kids other than my sweet boy. But the way this went down was terrible and humiliating, and my son and I were left feeling like we had violated your space by existing. You became the very thing that I am most afraid of. You became my monster.

A Wolf At The Door

It's IEP time again, and we all know how fun that is. Niko will be going to kindergarten next year, and he'll have to move to a completely new school since his current one doesn't have a special ed kindergarten. How strange is that? Special ed preschool programs, but no kindergarten. I feel the old anxiety acting up again. How will he be accepted? What will his new teacher be like? Will we get the "This school isn't a good fit" conversation again?

I worry too much. I realize this. Niko is better at adapting than I am, and he's been doing wonderfully well. Still.

One of my friends made some unkind comments about another friend's child the other day. Unwarranted and unsubstantiated comments, and it has, of course, caused some contention there. I think, who are we to be unkind to other people's children? Who are we to find them lacking in some way? My gosh, there is a wolf at the door all of the time, trying to get to our children. If you can't count on your FRIENDS to back you up, how are they ever going to survive?

Things Of Beauty

Just Us Girls

This week has been a blur of Young Women's meetings, a quickly contained house fire, a 6'1" stuffed shark named Dirk and MST3K. Oh, and bangs. Rock on!

Ahhhhh, the ocean.

Mmm mmm mmm, we're on vacation. I know, right? Luke burned a day of work and off we went, to Solana, CA. We're staying at a hotel a block away from the ocean, and we have had THE BEST time! Today we frolicked in the surf and drove down the highway by the sea. Yesterday we went to the San Diego Zoo and left only because they were kicking everybody out. They had lions, tigers and bears, oh my, but Niko was mostly interested in the hippopotamus tank (that's right, the tank. Not the actual hippos) and the traffic on the way home. His face was just alight. Nina ate some sand today and has been generally happy, as usual. And I think that I'm actually relaxed! What is this FEELING? My shoulder blades aren't contracted up to my ears!

Niko and a little girl nearly licked each other at the restaurant today. It was like the most disgusting slow-mo french kiss ever, but her mother fortunately intervened. "I'm sorry," she said, whipping her child to her bosom, "but she has a little bit of a cold." That made me want to laugh. She was so polite! "Ew, you were LICKEY!" is what I would have said, but obviously she's more wise than I. Later her husband asked, "Does he have Angelman syndrome?" "What?" "What does he have?" "Williams," I said, and he nodded. I could tell that he was going to look it up later. They seemed like a nice family. Which was good, since Niko tried to join them. Inducted by lickage.

Tomorrow we head home. It's a nice, leisurely five hour drive, and then it's back to work and life. (And Xenosaga 3 for me...my other little escape.) I haven't written anything this entire trip. Luke watched basketball and looked at golf clubs on ebay. I can tell you that I am 100% happy. A girl could get used to this.

Guess What I Just Did?

Finished editing my novel. Oh yes. Finished finished finished!

It was hard and took a lot of work, but my friends helped me and now it is ready to send out! I am so incredibly pleased. I am going to go to sleep and dream sweet dreams, and when I wake up I shall celebrate my birthday by printing out a nice, clean, finished draft. Ahhhhhhhhh.

I am lazy by nature. Most of you know this about me. Taking a dream of mine and actually seeing it through, that took some effort. I'm breaking old habits, and...what was that? Enhancing my quality of life???

Rock on.

Speaking Of Quality Of Life

Today my friend sent me a scanned picture of his face. He pushed it right up against the scanner, and there he is. I laughed so hard that I literally had tears running down my cheeks.

Now that's what I'm talking about.

I Want My Life To Be Shiny

It has come to my attention that my quality of life has been suffering.

There I was, in my ratty work-out clothes. My day had pretty much consisted of putting away books (Niko pulls them out to look at the bar codes) emptying the dishwasher. Loading the dishwasher, putting away books, pulling all of Niko's toys out of the dryer, and putting away books. I made Nina's bottles, put away books, ate salad for lunch, put away everything BUT books (no way was I going to touch those things again!) and then I broke down and put away books. All with Nina in one arm.

Sure, this is a skill. But is it a QUALITY skill? Couldn't I let the house go to pot for two hours while I made something fabulous? I have a sterling silver butterfly pendant that I've been meaning to put on a satin cord. Simple, right? Just right for spring. And I haven't because....???

So. This is my New Year's Resolution, three months late. ("Stop Procrastinating" never makes the list, so you know.) I shall Enhance My Quality Of Life. It doesn't have to be a huge gesture every day, but something to add sparkle back to life. I want my life to be shiny.

Last year's resolution was to "Ride More Shopping Carts". I definitely made good! You will see me careening wildly on my cart all the way to the car. It's more fun than you would ever dream possible! And sometimes strangers race you, and it's hysterically funny. I think we all shine a little that way.

We Are A Family

Luke, Me, Niko, Nina, and David Bowie. We all live in a little house among the stars and skip around holding hands all day.

The Rosy-Lipped Batfish

I saw this in Ranger Rick. And I may never sleep again.

Who doesn't like men? Banshees, maybe.

The funeral rocked. As much as a funeral can rock. Everybody was on their best behavior. We remembered the good things about grandpa and nobody came to fisticuffs by the grave site, which was a very real concern for me. Although Niko, out of his element, spent the time doing his death metal scream on the other side of the cemetery with Dad and Luke while I bent my head and tried to look pious during the dedication.

Do any of you struggle with how much information to give out? When Niko was diagnosed with Williams, we had been living in the same area for a while, and he was a year old. So he was already established and it didn't seem to change any of our friend's perceptions of him. Or at least they were generous and gracious enough that we didn't pick up on it, if it did. Then we moved to this (insert colorful language of your choice here) city, and all of a sudden, for the first time, we had to say, "This is our son Niko and he has Williams." And people were taken back. What is this strange syndrome? Is that why your son simply cannot sit still? Is that why he throws back his head and howls like a banshee on crack? Do you believe in banshees? And how would a banshee get crack? The public must know.

I don't know how to address this at large family gatherings. (Williams, not banshees on crack.) It's always been easy because my side of the family doesn't gather so much, so it never came up. I've always been an open person. In my opinion, it's always easier if people know things because then they can be prepared enough to behave appropriately. Unlike, say, when people get a divorce and it's a huge secret and suddenly you get a verbal caning for asking them to remind their husband that he's singing in church next week. Yeah, some of you guys know what I'm talking about.

Uh...I mean, that's just a random example.

I don't want people to think that Niko's misbehaving, because he isn't. He's doing the best that he can. I want people to be sensitive to the fact that he processes thing differently. But I also don't want to be tottering around pointing at my son and saying, "Niko? Williams. Deletion of the elastin gene. Delayed and loud." Because that's just stupid.

Other funeral highlights: Pervy uncles that somehow found God, emo cousins that suddenly turned respectable, and questions about my outfit, which was a black, white, and gray dress with my 4 inch Red Stilettos of Death. My response? "Grandpa's dead. I'm not." Also, my great aunt blinking her big blue eyes at me innocently and asking if my husband likes men. "No, he's married to ME", I say, prompting a long debate with my brother about men we know who do actually like men, but are still married to women. One of our super enjoyable "Psychology major vs. Sociology major" rows. We put on gloves and boxed. Every argument had a thesis statement and was backed up by three points. Turns out she just meant, does he like men to, you know, play basketball with, and stuff. Oh.

Booya.

Well, it's official. We're screwed.

Okay, so maybe it isn't that bad. Ask me after homemade pizza and tonight's episode of America's Next Top Model, and perhaps I'll have a much cheerier outlook.

Niko survived his cold, and then days later came down with a particularly nasty stomach bug. He's a bag of bones anyway, but he's lost more weight, and now Nina has it, too. The doctor doesn't think that he needs to come in until he hits a list of criteria, and thankfully he isn't that ill yet. And I think he's improving. But he's been lying on the floor/bed/my lap since last Friday. Today is Wednesday, for those who are interested.

This is a sad thing on its own, but my grandfather passed away a few days ago and we're planning on driving sickie children seven hours to the funeral. Which I'm singing in. Some of the family is "in" on the Williams thing, and some really will have no clue as to Niko's funeral behavior. Luke and my father have both volunteered to watch the kids in a spare room in the church if necessary, and of course it will be necessary. Niko is constantly squirreling under the pews and vaulting for freedom, although if he still continues to be listless...perhaps I should look at his weariness as a good thing. "What a well behaved child!" somebody might say to me. (That has never happened before, so of course this is a beautiful fantasy of mine.) "Thanks, he's sick," I'll say, and traipse off for what I am certain will be the post-service scuffle.

Usually I am much more optimistic than this. It doesn't come especially naturally, but I try. I have faith and hope and wonderful family and friends. I feel support. But some days, don't you just want to throw your hands up in the air and hit Cold Stone Creamery? I do. Oh man, DO I.

Meanwhile, Nina is babbling. Da da da blah blah nuh nuh nuh. She makes more sounds than Niko ever did, and she's six months old. Perhaps they'll chat together. She adores her big brother. Niko's sticking his fingers in his ears and humming/yelling more than ever now. Apparently I put his socks on too loudly. I'll be more careful of this in the future. :P And his hair? With all the rolling around on the floor, it has gone totally Cloud Strife. Totally fantastic! Google my geekdom, people. ;)