Saturday, December 24, 2011

Ghosts of Christmas Past

Every year as I'm unpacking the Christmas boxes, I find treasures packed among the tissue paper, like old friends come to visit for the holidays. So many ornaments remind me of the people who gave them to me, friends or coworkers I may not have seen in decades.

The most precious of these, of course, are the ones my son has made with his own little hands. Paper plate Santa faces:

Christmas trees created with tiny fingers dipped in green paint:

Ornaments made from macaroni glued to a paper plate and spray-painted gold:

Some are meticulous copies of an original:

Some reflect a more bohemian style:

Most were made at school:

Others were created at home in a spontaneous outburst of holiday enthusiasm:

All of them are so precious. They remind me how fast he's growing up. My days of macaroni Christmas ornaments are behind me. I probably won't get anymore gifts made of handprints. But all of these ornaments are a living memory of my little boy. Every year when I take them out of the boxes, I remember how little he was when these treasures were made. How proud he was to bring them home and hang them on our tree.

All are a reminder that the best gift I've ever received is my precious boy. Happy holidays to you and yours!

Thursday, December 15, 2011

Autism's Amazing Power of Self-Focus

Some animals eat their young. And I think I know why. They're probably sleep deprived because their little ones won't let them sleep.

Charlie's been working some late nights lately. It's really hard on him, cause he's not a night person. He doesn't have as much energy as he used to. When we were first dating, we could both work all day and afterwards go to dinner and a movie. These days I'm in my pajamas as soon as the sun goes down. We're normally in bed by 10:00 pm. Might watch the news for a few minutes, but I'm usually out by 10:30. I have to get up early to get Jack off to school. There is no sleeping late in this house. Jack won't allow it.

He's gotten pretty good about falling to sleep in his own room most nights. We have a whole bedtime routine we follow: bath, snack, reading, teeth, bed. The flannel sheets and pre-warmed bed (I turn on the electric blanket when he gets in the shower) make his bed all cozy and sleep-inducing. A small dose of doctor-prescribed Melatonine helps, too. But sometime during the night all this coziness wears off, and then he's awake.

Usually when he wakes in the night, he just stumbles into our room and crawls into the sleeping bag that's a permanent fixture on our floor. Most nights I'm not even aware of his arrival. I just find him sleeping there in the morning. It's those occasions when he wakes early in the morning and can't get back to sleep that are a problem.

Today was one of those mornings. My sleep was interrupted by lots of rustling sounds from the floor below my bed. "Jack, be quiet! Daddy and I are trying to sleep!" More rustling noises. "If you can't sleep, get up and go play on the computer. But be QUIET!"

"Can I take the dogs out?"

"Just go out and be quiet!"

By this time, Daddy, who didn't get to sleep until after midnight because of his late shift, is awake and not happy about it. "Jack, if you can't be quiet, you're gonna have to sleep in your own room from now on!"

Lots of self-recrimination ensues on Jack's part. "I'm so stupid. I don't deserve breakfast. You should just kill me!" Such a drama queen!

I have to remind myself that his brain works differently. He just doesn't seem able to empathize with the feelings of others. My friend Melinda says he's very "self-focused." That's one way to put it. He'll cry and be upset if he sees animals or children being mistreated on TV, but he doesn't seem to be aware of the feelings of those around him.

One of my favorite shows is "Parenthood" on NBC. They have a character on the show, Max Braverman, who has Aspergers. His behaviors are very similar to Jack's. A few weeks ago they had an episode where Max's parents have promised to take him to a museum, but they end up having to work that day and aren't able to go. Max's sister has to study, so she can't take him. Max, who is about the same age as Jack, decides to go by himself. He ends up getting lost and being returned home in a sheriff's car. Max's sister, Haddie, is the neurotypical sibling who bears the brunt of Max's behaviors and has just had enough. Watch her reaction when Max is returned home to his family: Max Comes Home (Parenthood). He's completely clueless about the worry and anxiety he has caused all of them.

Jack's world pretty much revolves around Jack. I don't think it's so much selfishness as it is self-absorption. He can be very loving and sweet, but he's very focused on his own needs, often to the exclusion of the needs of others. I'm hoping we'll be able to teach him to think of others a little more. I'm just not sure how much his brain will let him. But we'll keep trying.

Sunday, December 4, 2011

Changing the World One Recess at a Time

Jack is not exactly an outdoor boy. He would rather be in front of a computer or a video game console than almost anywhere else in the world. That's why I was so surprised that he and his school buddies had taken to playing a game at recess with the unfortunate name of "Butts Up." I don't know all the details, but I understand it involves hitting a big rubber ball against the outdoor wall and then kids doing stuff with the ball. There may have been some throwing of the ball at other children.

For some reason this game became banned by the yard duty ladies in the past couple of weeks. Most likely safety issues were involved. Jack and friends were not pleased. "It's the ONLY thing I like to do at recess," he moaned.

Well, Jack and his buddies have been watching the news. They've seen the Occupy Wall Street protesters on TV. Jack saw the footage of the UC Davis students peacefully protesting yet another tuition hike and getting pepper-sprayed in the face for it (seriously, Channel 13, how many times do we really need to see that horrific footage??? Enough already!). He's heard the stories his dad tells about how people in the 60's protested against the war in Viet Nam. He learned in school about the colonists protesting against British rule (hello, Boston Tea Party!) when they were unhappy about the way things were going. This country was founded on Freedom of Speech and the right to peaceful assembly.

So they did the obvious. They decided to Occupy Recess. Mostly this involved about 10 or so boys and girls chanting, "We want Butts Up! We want Butts Up!" during recess. The yard duty ladies were amused. The Principal and Vice Principal were called in. Phone calls to parents ensued. No law enforcement agencies were involved. No television cameras were on scene to record and replay events endlessly on the late news. No one got pepper-sprayed.

Once the dust settled, the kids were instructed to collaborate on a set of rules agreeable to everyone that would meet school safety rules. If the Principal decides they're acceptable, Butts Up could be reinstated.

An American Civics lesson come to life: when you see something wrong, take action to change it. Our little radical. He makes us proud!

Friday, November 25, 2011

A Week at Home

Jack has been out of school all week for Thanksgiving vacation. I love that he gets the whole week. When I was in school, we only got Thursday and Friday, so if your family was going anywhere you'd have to skip. Not anymore! Some of his friends are in Hawaii this week. Some are at Disneyworld. Not us. We're at home.  Just us and the dogs.

It's been nice though. Charlie was off on Tuesday and Wednesday, so he had a three-day holiday with Thanksgiving Day. (Some holiday! He spent all day yesterday cooking the turkey and helping me clean up!) It was nice to have him home for a few.

Jack and I caught up on doctor's appointments this week. Monday he went to the dentist for a cleaning, where we found out he has a deep overbite (front teeth are banging together when he eats), so we got a referral to the orthodontist. Tuesday morning we went to the ortho, where we found out that he doesn't need braces just yet, but he will need to be fitted for a retainer. Following that was our monthly visit with Dr. M, who wanted to hear all about our trip to Sly Park, since we haven't seen him since before we went.

We did manage to squeeze in a couple of play dates this week with Miss S, but most of our time has been spent at home. Lots of PS3 time this week, which is exactly the way he likes it.

Got him a haircut this morning, but no shopping for me. I've started getting the Christmas decorations down from the garage. Might as well get them up and enjoy them for a while, since it's so much work putting them up and taking them down.

It's been a relaxing, low-key week. I'm thankful that everyone's healthy, that we have a cozy home and enough to eat. Can't really complain about too much. Life is good. Wishing the same for your family as we head into this holiday season.

Friday, November 11, 2011

Something's Funny Behind the Door

I have a folder in my Outlook email called "Jackisms." When Jack was smaller, I would write down the cute things he would say or do and save them in that folder. You forget so much as they get older. I wish there was a place you could save that baby smell. Not that one, the good one. The fresh out of the bath in the clean jammies smell.

When Jack was two, we lived in a very small apartment. Here's a story I recorded for posterity nearly nine years ago. I hope you enjoy it as much as I do re-reading it now:

The second bathroom in our apartment has two doors: one enters from the hallway (of course) and the other leads to Jack's bedroom (or I should say, "playroom" cause he certainly doesn't sleep in there--he prefers the dormitory style sleeping arrangements of Mom and Dad's room). Since we moved in last summer, I have kept the door between that bathroom and his room closed and locked for reasons of space. He has so much stuff in his room (tricycle, jogger, scooter, toy shopping cart, etc.) that we needed the extra wall space afforded by keeping the door closed. Last night he was in the bathroom with me and started asking if we could open the extra door. He was jiggling the handle and saying, "What's this, Mommy?" Suddenly it dawned on me that he had no clue that his bedroom was behind that door. I asked him what he thought was behind the door, and he said, "Blankets?" He thought it was another closet!

So, for the first time in nearly a year, I unlocked the door to the chamber of mystery  (pardon me, I've been reading Harry Potter). He peeked through the door and immediately started giggling, "It's my room!" He thought that was the funniest thing he'd ever seen! He kept going in and out of the door, and even went and dragged Charlie away from the computer. "Daddy, come see what's funny!" He was laughing so hard, he could barely stand up.

This morning when we got up, he was still at it. "Daddy, come see what's funny!" Who knew that opening one small door could be such a huge source of delight and entertainment? It just goes to show that you never know what surprising things you'll find if you have the courage to open the door and find out what's on the other side.

Saturday, November 5, 2011

Jack & Debbie's Excellent Sly Park Adventure!

Jack and I went to camp this past week. We spent Monday through Friday in the beautiful Sierra foothills at Sly Park Environmental Education & Conference Center with 210 6th graders from two schools: Rocklin Academy and Breen Elementary (also in Rocklin). We came home yesterday afternoon, tired but with some wonderful memories! I'll try to give you just a taste of what we experienced this week.

Day 1: The Adventure Begins
Principal Phil welcomes campers to Sly Park
Soon after arriving on Monday morning, all the kids gathered in the bleachers on the outdoor basketball courts. After welcoming them to Sly Park and explaining some of the rules for the week, the children were sorted into eight cabin groups: Fox, Rattlesnake, Porcupine, Raccoon, Incense Cedar, Black Oak, Douglas Fir and Manzanita. The boys' cabins were all named after animals; the girls' after trees. (I'll let you draw your own conclusions on that.) The adult chaperones had earlier been assigned to cabins, two adults in each cabin. After being dismissed, everyone scattered to settle into our cabins before lunch.

I was in Incense Cedar, along with a mom from the other school whose daughter was attending Sly Park. Melissa and I were responsible for making sure all 25 girls in our cabin got wherever they needed to go safely and relatively on time. We were also in charge of maintaining order in our cabin: making sure everyone took turns in the showers, respected each others' belongings and personal space, got to meals on time, etc.

Monday night was Game Night. Since the weather was still good on Monday, everyone gathered on the outdoor courts again after dinner to play relays and have a tug of war tournament. At this point, Jack had been begging me all day long to take him home. "I hate Sly Park! I want to go home!" The chaos and noise of Game Night was just too much for him. Fortunately, his teacher saw his distress and very kindly pulled him out to sit on a bench off to the side, where it wasn't quite so noisy.

Soon it was time for our late night snack: homemade cookies. Everyone got a nice, big, fresh cookie before heading back to their cabin for the night. Monday night we had snickerdoodles. Sweet dreams, little campers!

9:30 is "Lights Out" every night at Sly Park. The home teachers and Sly Park teachers make the rounds every night to make sure everyone is in bed and quiet. Melissa and I were really happy that our girls were all in bed and quiet when the teachers came around that first night. We were the quietest girls' cabin (Jack's cabin, Rattlesnake, won for the boys) and won the privilege of being the first cabin into breakfast the next morning!

Day 2: Still Whining/Working Me
Tuesday morning we did a short hike down to the canyon to build shelters from natural materials, as if you were lost in the woods and needed to protect yourself from the elements until you were rescued. Jack refused to touch anything or sit down anywhere because, "There could be bugs!" He continued to whine and cry that he wanted to go home.
I'm so miserable and unhappy!
After lunch our group went to Rock Wall Climbing in the gym. Jack did much better than I expected him to. He made it nearly to the top, which is higher than he's ever been before. He's always been afraid of heights.
That's Jack on the left.
Unfortunately, when we said, "Jack, you're doing great! You're almost to the top," he decided he was finished. "I'm done!" he said. "Bring me down!" More tears and whining ensued. At this point, I decided I needed to get away from him for a bit, cause he was really wearing me down. I started to wonder if I was torturing my son by forcing him to endure these activities when he'd rather be at home in his familiar environment (with his video games). I know, I know. He was working me big time, but I hadn't slept well the first night and I was tired, which made everything worse. I was disappointed that he wasn't allowing himself to enjoy his experience with his friends and was worried I might have to take him home.

Since he was already well-supervised, I told his Sly Park teacher, Miss Rebekah, I was going to take a break (with her blessing) and took myself off to the cafeteria for a nice, hot cup of tea. While in the cafe, I ran into Jack's teacher from home and talked to her about my concerns. I told her I might have to switch hiking groups, since my being with Jack was obviously not working out. I called my husband and he also said maybe I needed to separate myself from Jack for his own good--and mine!

After my break, I caught up with our group at the Native American classroom, where Miss Rebekah, taught them about how the Miwok people made fire with sticks. We also saw a teepee built out of cedar bark, which is how the Miwoks made their homes. Jack and his buddy Will got to try to make fire with sticks, but of course Jack was still trying to talk me into going home. On the way back to our cabins, I had a talk with Jack. I told him that unless he stopped with the whining and crying, I was going to have to take myself out of his group, because it made me really sad to have to listen to him being so unhappy all the time. "Do you want me to have to change groups?" I asked him. "No! I want you to be with me!" he said. He agreed to try harder to enjoy himself and stop whining.

After that conversation, we seemed to turn a corner. That night he was looking forward to dinner. He started eating things I'd never seen him eat before, and he was even going back for seconds! After dinner that night, all the campers met in the amphitheater for songs and skits. He went onstage and sang a silly song along with his cabin-mates and seemed to enjoy himself. Later that night we went to the gym for indoor activities. I told him he didn't have to do anything but sit with me, if he was tired or it was too overwhelming. He did sit with me for a bit, but then started running around with a few of his friends from school. He actually seemed to be having fun! Finally!

Day 3: Starting to Enjoy Himself 
The next morning (Wednesday), we did a short hike to the Children's Forest. This time Miss Rebekah had the children blindfold one child, while that child's buddy guided them down the trail. The buddy had to be very careful to keep his or her partner safe, explaining any obstacles in the path while keeping hands on their buddy the entire time. It was a trust-building exercise. Jack and Will were so very sweet together. They've been friends since kindergarten, so they already have a lot of trust between them.

Jack & Will on the Guided/Blindfold Hike
After lunch, our group went on a longer hike to Park Creek. After talking to Miss Rebekah, I decided to bow out of any further long hikes. My knees were starting to give me trouble, and I knew that a long hike up and down hills might result in me having to be rescued by helicopter. I also thought Jack might do better without me, so I sent him off with the other adult group leader and spent the afternoon reading and drinking more hot tea.

About 4:30 I saw the hikers returning. Jack was tired but happy, smeared with red mud (aka Native American face paint). I couldn't believe this was the same boy who would never fingerpaint or allow his face to be painted because he didn't like the way it felt! The same little boy who as a toddler used to go up to strangers in the park and gesture for them to brush the sand off his little hands! The same boy who only the day before refused to touch anything or sit down because he was afraid of bugs! I was thrilled!

My little hiker returns with Native American face paint (mud)
That night after dinner, we had Carnival Night. All the kids got to run around the gym and participate in all kinds of carnival games, including an eating-an-apple-off-a-string competition and face-painting (again, not my kid). I was quite astonished, however, to see Jack actually eating an apple! He never eats fruit at home.

Who are you and what have you done with my son?
After the Carnival, our group went to play Science Jeopardy with Jack's regular Rocklin Academy teacher, Mrs. Chappell. She divided the kids into three groups, and it worked very much like regular Jeopardy, only all the questions were about science. Categories included Water, Animals, Evolution of a Rock, Astronomy, etc. (can't remember them now!). I was amazed at how much these kids knew about science! Had to laugh when the question was "Name two environmental adaptations of a fox," and Jack muttered under his breath, "They slam doors and keep you awake at night!" (Fox was the cabin next door to Jack's. I gather they'd had some trouble settling down the first couple of nights.) What a comedian our boy is!

After we got our cookies that night (a yummy pudding cookie with semi-sweet and white chocolate chips!), we headed down to the giant telescopes that had been set up to look at the stars. The original plan had been to have half of the kids who'd signed up for astronomy night go to telescopes on Wednesday night and the other half on Thursday, but as inclement weather was in the forecast for Thursday, everybody got to go together on Wednesday night. That was 120 or so kids (I may not have remembered the number correctly, but it was a lot!) standing in line to briefly peer through three telescopes. Jack and I went down in the complete darkness to take a quick look at Jupiter and 3 of its 4 moons, the surface of the moon and the galaxy Andromeda, but I had to hurry back to our cabin to be with the girls while my cabin-mate Melissa went to share the experience with her daughter. At least they let the adults take cuts in the line, so it didn't take me long. It was a little odd leaving Jack out there in the dark, but I knew he'd get back to his cabin safely with his buddy Will. He's getting so responsible!

Day 4: It's SNOWING!
Thursday morning was a little colder. We heard there was a storm coming in later. We started to see some high clouds passing over, but the weather held for a few more hours. That morning our group went to Arts & Crafts. Miss Rebekah helped each child silk screen a design onto a shirt they'd brought from home. Jack hadn't shown any interest in picking out a shirt at home, but he seemed happy that I'd brought a plain, white T-shirt for him to silk screen.
Jack & Miss Rebekah silk-screening his shirt
The finished product
 After Arts & Crafts, we moved on to the Planetarium. From the Sly Park web site, "The Starlab planetarium projects the night sky indoors where students learn about constellations, legends from many different cultures, and concepts that help them understand astronomy." From the outside, this $20,000 piece of equipment looks like a big silver blowup bounce house. We crawled through a tunnel to enter the space inside, where Miss Rebekah played reggae music for us while she set everything up. Once inside, we forgot it was still daytime outside as we gazed up at the stars projected on the walls and ceiling. It was fascinating!

That night our campers met in the gym for our songs and skits, since it had started to sprinkle outside. After the meeting, our group left for a night hike through the woods. Miss Rebekah led us through the pitch black and a steady rain, down the same trail we'd traveled the day before on the Blindfold Hike. At first Jack was scared. It was dark. It was wet. There were puddles. We couldn't see very well. But about halfway down the hill, we started to notice some snowflakes mixed with the rain, easy to spot with the flashlights some kids were carrying. He got excited about the snow and forgot to be scared. At the bottom of the hill, we stopped in a  clearing, and Miss Rebekah told us a Native American legend about how a squirrel rescued the sun from the top of a pine tree, got burned in the process and became a bat (short version). At the end of the story, she said, "If you hold out your hand, I'll give each of you a squirrel's eye to eat!" The "squirrel's eye" turned out to be a yummy marshmellow, and all the kids were delighted! On the walk back up, it became even more apparent that it was snowing.

When we got back to the gym, where everyone was reassembling before going for bedtime cookies, there was great excitement over the snow. It was a pretty wet mixture of rain and snow, but some of these kids from the flatlands of the Sacramento Valley have only rarely, if ever, seen snow. Jack had only seen it snow from the inside of the car when we were going to Truckee one time, so everybody was REALLY excited that it was snowing!
Look very closely. Snowflakes!
Everyone was hoping we'd wake up to a couple of inches of snow in the morning (except for the parents who had to drive home in it!). Unfortunately, it was just a brief flurry. Friday morning would dawn cold, but clear.

Day 5: We Say Goodbye to Sly Park
Friday morning, our last morning at Sly Park, we packed up and prepared to leave for home. The girls in our cabin were sad to leave their new friends, but since they all go to school in the same town, they can easily keep in touch when they return home. Some of them will be going to the same middle and high schools.

Jack was just happy to be heading home to our dogs, Cookie and Buddy, and his video games. Just one last hike, one more lunch, a group picture and we were off back down the hill toward home. Heading back up toward the freeway, we did see quite a bit more snow. It had snowed a little heavier up the hill than it did at Sly Park. Our drive home was uneventful. We were back home by 2:15. Everyone was happy to see us, especially Cookie and Buddy, who nearly wiggled themselves to pieces with delight! It was good to be back at home again.

Sly Park was a wonderful adventure. I'm so glad we were able to share it together. I wasn't so sure we'd make it for a while there. The professional, fully credentialed teaching staff was fabulous, especially our wonderful, patient and kind group teacher, Miss Rebekah. Principal Phil was great. The food prepared by the cheerful kitchen staff was delicious (thank you Connie, Carol, Pam, Barbara and Tammi!). I saw Jack eat things I never thought he'd eat (chicken tacos, cheese enchiladas) and was delighted to see him go back for seconds on more than one occasion. I guess the hiking made him hungry, and we all looked forward to our meals with great pleasure. I weighed him this morning after we got home, and my extremely picky, skinny boy actually gained 4 pounds at Sly Park! Awesome!

It was a wonderful adventure and we'll always remember our time at Sly Park. A time we were so blessed to share with each other and all of our friends!

Packing up to leave.

Thursday, October 27, 2011

We're Going to Science Camp!

Next week Jack's 6th grade class is going to Sly Park Environmental Education & Conference Center for a whole week of outdoor study. I'm going along as an adult chaperone. I cannot tell you how excited I am to be going. Seriously! A lot of people would think a week at science camp with a bunch of wild 6th graders doesn't sound like much of a vacation, but I'm so looking forward to it!

They didn't do this program when I was in school (back in the dark ages, you know), so I'll be experiencing the program for the first time along with Jack. I'm looking forward to spending some quality time with him and his buddies, even though I'll be bunking with the girls all week (heated cabins and hot showers--yay!). Jack is still at an age where he doesn't really mind his mom being around. With his issues in particular, I think it will be a comfort to have me nearby in case he feels overwhelmed by the unfamiliar surroundings. I'll also be handy should there be any questions regarding his medications or behaviors. This is a golden window of opportunity for me to share this adventure with him. In a couple of years, he'll be a teenager and may decide that Mom's not so cool anymore.

He's also very lucky that he's been at the same school since kindergarten. Because it's a high performing charter school with a great reputation, there's a long waiting list for admittance. People don't tend to come and go much at his school, since it's so tough to get into (lottery system), so he's pretty much been with the same group of kids for the last six plus years. Some he's known since preschool. They have a lot of history together, so they're used to each other and more accepting of each other's personality quirks. There's not a lot of teasing or bullying that goes on, for which we're deeply grateful. He might not have had that experience at another school.

My biggest concern about him being away from home for a whole week has been his food issues. He's an extremely picky eater. Recently he's shown some interest in trying some new things and discovering he likes them (hello, Chick Fil A chicken sandwich and Fiber One Brownies). I'm hoping he'll be hungry enough at camp that he'll try some new things and won't starve to death in five days. I also hear the food there is very good. Gonna have to restrain myself!

I did call and speak to the camp nutritionist this morning about his soy milk. She was very kind and reassured me that he'll have a place to keep his milk and will be able to access it on his own, as needed. We just need to introduce ourselves when we arrive.

My hubby Charlie is taking off from work next week to keep an eye on Gramma while I'm gone. She's 88 and needs some help with things. I'll be educating him over the next few days about all the stuff I usually take care of when I'm home. Things like how to turn the heat on and off, how to operate the gas fireplace, how to switch Gramma's TV over to the DVD player and back again. It's a little bit hard for me, cause I'm used to being in charge around here, used to being the one everybody comes to when they need something. I'm making a list for him of things he needs to get done each day, writing down important phone numbers and will have her medications all organized for the week.

Whew! It's a lot of work getting ready to be away, but I do appreciate his willingness to take over and give me a few days away. He's a good cook and not afraid to take care of things like cleaning up, washing dishes and doing laundry, although I've spoiled him a little over the past few years. He works hard for Jack and me, so I try to keep things going here at home as much as possible.

Not sure if I'll have access to a computer next week (or the time to write!), but I may try to post a picture or two of the area (have to respect the privacy of the campers, so may not have any of them I can share). I'm sure I'll have lots to tell you when I get back from camp!

Saturday, October 22, 2011

Somebody's Hungry!

I think we may be going through a growth spurt. Jack's sleeping well. He falls asleep pretty easily at night and doesn't come into our room to sleep on the floor till the wee hours (one morning lately it was 5:30 before he made his nightly trip from his room to ours). But the most amazing thing in the past few days is that he's eating! I bought a big box of Fiber One 90 Calorie Brownies the other day at Sam's Club. Mostly for me. And as they're individually wrapped, I thought they'd keep longer in the pantry and not get dry and stale.

I gave one to Jack to "see if you like this" the other night. He LOVED it! So now he gets one in his lunch for school, but he also asks for them at home. He ASKS for food! Kind of weird. Especially since he's not really a big chocolate guy. The other night he ate THREE of them after dinner! Just now he ate two after his hot dog lunch. Wow! Very unusual behavior for him.

A week from Monday his entire 6th grade class is going to Sly Park, a science camp for elementary kids in the Sierra foothills. One of my biggest concerns about him going away for a whole week has been his issues with food. Maybe he's starting to grow out of it? I'm hopeful that when he's at camp, he'll see the other kids eating everything and be willing to try some new things. I've heard the food there is very good. And I'll be there to keep an eye on him (I'm going along as a parent chaperone).

Having grown up with two boys in the house, I know teenage boys can eat. You have to hurry up and get your fair share before it's gone when there are boys in the house. I just never imagined we'd go through that with Jack. I guess we're in for it now!

Thursday, October 13, 2011

A Lesson Learned from Harry Potter: Good vs. Evil

Jack and I have been reading Harry Potter for the past few months. I read to him at bedtime, after his shower, while he's eating his snack. He's not much of a reader on his own. Don't know if it's because he has trouble reading or he just doesn't enjoy it, but he enjoys me reading to him.

We're in the last book of the series now, "Harry Potter and the Deathly Hallows." I warned him that it would get very dark and some of the characters would die. I knew it was a story about good versus evil, but it's been a few years since I read it myself, and I had forgotten some of the plot lines.

The other night we read a part about the Ministry of Magic (the government agency of the magical people, aka witches and wizards) passing a new law that required all "Muggle-borns" (those witches and wizards with non-magical human heritage) to register with the authorities. Some of the Muggle-borns were being carted off to Azkaban, the wizard prison, simply because they were not "pure-born" witches or wizards. This stopped me in my tracks for a moment.

Jack is in the 6th grade. So far in his education he's studied Ancient Rome, Greece, Egypt, South America, the Renaissance, the American Revolutionary and Civil Wars, and California history, but I don't recall them learning any modern day European history yet. Hmmmmm.

"Jack," I said, "have you ever heard of the Nazis? Or Hitler?"

"I know Hitler was a bad man and he killed himself." So he knows a little.

I told him that in the days leading up to WW2 when the Nazis first came to power, anybody who was Jewish or had Jewish relatives was required to register with the government and wear a yellow star sewn on their clothes to identify them as a Jew. And later on, Hitler started taking all the Jewish people he could find--including moms, dads and little children--to prison camps where most of them died. I tried to explain to him that 6 1/2 million Jewish people were killed by Hitler and the Nazis.

"Well, that's just wrong!" he said, with 11-year-old indignation.

"Yes, it was. It was very wrong." How do you explain such evil to a little boy? Do I even want to? Maybe not just yet. At least I can teach him to judge the people he meets by what kind of people they are, by what's in their hearts, and not by the color of their skin, their religion or where they may have been born. There are some good lessons to be learned from Harry Potter.

Sunday, October 9, 2011

Life is Good: Feeling Fallish

We seem to have successfully survived another horrifically hot Sacramento Valley summer and are heading into Fall. Life is good. We had one little rain storm last week and are looking forward to cooler weather. Haven't had to use the AC in over a week. Woo hoo! I'm looking forward to that lower electric bill, too.

Got the Halloween decorations out today (finally) and got them up. Light-up Jack-o-Lanterns? Check! Scarecrow on the front porch? Check! Halloween countdown calendars up? Check! We're set.

Jack's not so much into Halloween. He's not really interested in dressing up anymore (insert sad face emoticon), doesn't really care about eating the candy (Daddy and I usually take care of that for him) and he's really not into the scary stuff. He refuses to have anything to do with anything spooky. Doesn't like things that jump out at him in the dark; doesn't want any part of the haunted houses. I understand that. Kids on the spectrum do not like surprises or anything unexpected.

I love this time of year. A sense of anticipation is in the air. It's more than just the change of the seasons. I feel like October is just a warm-up for the holiday season: the most wonderful time of the year! (You can thank me for getting that Andy Williams song stuck in your head for the rest of the day.) As soon as Halloween's behind us, Thanksgiving is right around the corner (more food!) and then Christmas. Holiday decorations, festive food (always me with the food), Christmas carols, the whole shebang. When I was growing up, Christmas wasn't about the presents, although that was a big part of the excitement. It was more about being together, warm and safe with the people we loved. Watching holiday specials on TV, eating cookies and popcorn (again with the food!). I'm hoping Jack will have those happy memories of having been safe and loved as a child when he's all grown and starting holiday traditions with his own family.

At the end of this month, Jack's going away for a whole week to Science Camp with his 6th grade class. Because of all his medications, his food issues and his behavioral quirks, I asked to be allowed to accompany him as one of the parent chaperones. Charlie is taking time off from work to look after Gramma. I can't believe how excited I am to be going away for a whole week! I haven't been away for a whole week since 1997! Seriously. I'm thrilled. Life is good.

Saturday, October 1, 2011

Eating is a Chore?!

Jack told me the other day that he feels like eating is a chore, something he has to do but doesn't really enjoy that much. Can this possibly be my son? Could he have been switched at birth? Unfortunately, eating has always been one of life's greatest pleasures for me. I was raised in a household where food was always associated with everything that was pleasant: popcorn for the movies, cake for birthdays, ice cream for a special treat when we were out for a drive. And candy (always candy!). "Eat all your dinner and you can have dessert!" My mom was a pretty good cook, so we always had homemade cookies, cakes and pies in the house. All the holidays revolved around special foods: Fourth of July barbecues with hand-cranked ice cream, Halloween candy and cookies, Thanksgiving turkey and pumpkin pie, Christmas cookies & fudge. Even New Years was a food holiday in our house: we always had trays of chips and dip or salami and cheese to snack on while waiting for the ball to drop at midnight.

I still go through a good part of every day looking forward to what I'm going to eat at my next meal. But Jack is different. Even as a baby, we noticed he wasn't especially interested in food. He loved his formula and would drink it greedily when he was hungry, but he was just never very interested in the finger foods other babies seemed to enjoy.

On his first birthday, he played enthusiastically with his cake. Had it all over his hands and face, but not a morsel went into his mouth. Just not interested. We used to have to do a floorshow to get him to eat at all. We'd have toys on the tray of his high chair and distract him with silly faces and funny noises, while trying to shovel organic baby food into his tiny mouth. This was moderately successful, but he never really showed much interest in feeding himself.

Jack has Autism (PDD-NOS), ADHD and Sensory Processing Disorder. His brain processes things differently than those of us who are "neurotypical." Things that smell or taste delicious to the rest of us, can  have an unpleasant odor or taste to him. Textures can also be very disturbing to him. He cannot abide potatoes (my absolute favorite vegetable!) in any form: no french fries, no potato chips, no potatoes mashed, baked or fried.

Getting enough calories into him has always been a challenge. He never asks me, "What's for dinner?" He doesn't open the refrigerator looking for a snack. He never begs me for something to eat because he's "starving." I'm not even sure he realizes that he's hungry at all. Sometimes I forget to give him lunch and realize it's 5:00 o'clock and he hasn't eaten since breakfast. Doesn't take after his Mommy at all!

Jack is much more than just a picky eater. It's like the part of his brain that relishes eating is just not there. I'll ask him, "What would you like for lunch?"

"I don't know," he'll say.

"Are you hungry?"

"Not really."

And when he does eat, it's only enough to keep him going. He rarely, if ever, cleans his plate or asks for seconds. Who knew that feeding one skinny eleven year old boy could be such a challenge? How could anyone think of eating as a chore, rather than as one of life's greatest pleasures? Whoever heard of such a thing?

Thursday, September 22, 2011

What a Crazy Week!

The major portion of last week was taken up with getting Jack in to see his pediatrician so that we could get a referral to a neurologist to discuss his food and sleep issues. We saw his primary on Monday afternoon, and Dr. C promised to fax a referral over to the neurologist's office. On Wednesday, I called to try and make an appointment with Dr. K, but they didn't have the referral, so more phone calls to Dr. C's office. Finally got that straightened out and was able to get a cancellation for Friday morning. Woo hoo! But when I told Dr. K's office that Jack also sees a family psychiatrist, they asked to get his records, too. More phone calls and a trip to Dr. M's office early Thursday morning in order to sign a form to release Jack's records to Dr. K. Done and done!

Friday morning we went to see Dr. K. He added another medication to Jack's regimen to "boost" the anti-anxiety meds (poor guy's fingernails are chewed to nubs). The biggest and most unpopular recommendation of all was to limit, if not entirely end, Jack's time on the video games and computer. Dr. K says he's addicted to technology. Well, you can just imagine how this went over with Jack. For someone who has no friends in the neighborhood (except for Miss S, of course) and doesn't play outside, doesn't enjoy reading, has pretty much outgrown the Legos, just what is he supposed to do all day? A big portion of his world at home is playing with his online friends on the PS3, designing game levels and creating costumes. He was sooooo excited about his birthday on Monday and getting the Little Big Planet 2 game he'd been begging for all summer. Needless to say, he was pretty upset by this turn of events. It was hard to take him back to school knowing he was upset. I was worried he would have an "issue" with someone at school, as he was already pretty worked up. 

We were so worried, in fact, that Charlie stopped by the school on his way in to work (late day) just to check on him. He talked to the Principal who called and talked to his teacher in the classroom. Both of them assured  us he was just fine and having a good day.

The video game issue is tough. Charlie feels that Jack is not just playing games, but creating and designing. That's what he wants to do when he grows up. On the other hand, I know study after study has shown that too much technology can change a child's brain function, but then he's not a neurotypical child in the first place anyway so maybe these rules don't apply? For the time being, we've decided to still let him have his games, as long as his homework is finished and he's doing well in school, which he is. We do shut the PS3 off around 7:00 when it's time for him to get in the shower, and afterwards he has a snack and we read for a while before bedtime at 8:30.

On the up side, his new medication is working great! I give it to him, along with a very small dose of melatonin, early in the evening. He's been falling asleep in his own bed (hallelujah!) and one night even slept through the night in his own room! Major miracle! Even when he comes into our room, he's pretty much sleepwalking and goes right back to sleep on his pallet on our floor. At least he's getting the sleep he needs and not staying up till 10:30 or 11:00 at night now. Yay!

Just as the dust was settling on that situation, my 88 year old mother took a fall on Sunday morning while she was out walking Cookie, our Yorkie Poo. I was looking at the computer after church and she'd gone out with Cookie, when a few minutes later she came in the front door and said, "Well, I took a little spill." Fortunately, a kind family who lives in our neighborhood (still don't know exactly who it was) saw her fall, stopped their car and gave her a ride home. I posted a thank you note on our Good Neighbor Facebook page and was pleased to see how many people wrote that they've seen my mom walking the dogs in the neighborhood and hoped she'd be okay.

Thank goodness she didn't break any bones or require any stitches this time (four years ago she broke her wrist, once she bumped her head and had to have four stitches and another time she fell and busted her lip open--nine stitches that time). I took her to the ER and they checked her all out. Also took her to see her regular doctor on Monday morning. She was pretty sore for a couple of days, but is getting better every day. She still has a brace on her right wrist and a bandage on her elbow, but it could have been a lot worse. Bad news for her is that her doctor says she probably shouldn't be out walking by herself anymore. This is going to be hard for her, because she enjoys getting out and walking and considers taking the dogs out one of her "jobs." Up side for me is that maybe I'll get out and walk the dogs, and heaven knows I could use the exercise. Just waiting for the weather to cool off a little bit.

Anyway, that's our past few days in a nutshell. Life is never boring around this house! Thank goodness everyone's relatively healthy and happy. Hope the same for your family!

Thursday, September 8, 2011

One Tuesday Morning in September

It was just another Tuesday morning. I'd gotten up early as usual with my not-quite-one-year-old son. My husband got ready and went off to work. Playhouse Disney was on the TV. Just a few minutes later, Charlie called me on his cell, "I'm listening to the sports channel, but they're not talking about sports. Something's going on and I think it must be pretty big. You should turn on the TV and see what's happening."

I changed the channel to MSNBC and at first couldn't make any sense of the pictures I was being shown. A plane crashed into the World Trade Center? And a few minutes later, another plane crashed into the other building? There's another plane out there headed for Washington, DC? And shortly after that, the World Trade Center fell DOWN? How is that even possible?

I stared unbelieving at the images on my television, unable to wrap my mind around the events being shown there. I watched in horror, trying to hold myself together and remain outwardly calm for the sake of my small son playing with his toys on the living room floor.

At the time, we were living in an apartment on the outskirts of Reno. Charlie was working, while I was home with our baby son and my beautiful view of the rugged Sierras off the back patio. My days were filled with Baby Einstein and Bear in the Big Blue House, long walks sandwiched between Jack's morning and afternoon naps, pushing him in his stroller. I was two hours and a mountain summit away from the rest of my family.

I did what everyone else did that day. I called everyone I loved and made sure they were safe. I watched surreal images unfold on TV. Images of tragedy and heroism, co-workers and strangers reaching out to help each other. Firefighters going into buildings and not coming out again, while their engines stood in the street covered with debris. New Yorkers walking across the city's bridges on foot, trying to get home to their families any way they could. Rescue workers unfurling a huge American flag from the side of the damaged Pentagon. Members of Congress standing shoulder to shoulder on the steps of the Capitol singing God Bless America. There were no Republicans or Democrats that day. We were all Americans. In this together.

As hard as I tried to appear calm and "normal" that day, somehow Jack, only eight days shy of his first birthday, perceived that something was not quite right with Mommy. On any other day, I could lay my sleepy boy in his crib, where he would immediately roll over onto his side, pop his thumb in his mouth and go right to sleep. But today he wasn't having any of that. He insisted that I hold him and fell asleep in my arms three times that day, once in the morning, once in the afternoon and again at bedtime. He was too tiny to understand that the world he lived in had been changed forever that day, but he could feel that something was wrong.

As the days went by, we stayed glued to the television, watching the disaster unfold. I depended on MSNBC's news anchor, Brian Williams, in his pale blue shirt and conservative necktie, to keep me up-to-date on the latest developments. By the end of the week, he almost seemed like a member of the family.

That Friday evening, September 14, 2001, three days after the events of 9/11, as we watched the current events on TV, Jack took his first unassisted steps across our living room. As we celebrated this milestone in our baby's life, I thought about all those parents who would never see their babies' first steps. So many loved ones were lost that day. But life goes on.

Those who tried to destroy us on September 11, 2001, failed. We're still here. We owe it to those who gave their lives that day to keep going. Keep living our lives and stay strong as a community and as a country. Life goes on. But we'll never forget that day or those whose lives were stolen on that Tuesday morning.

Thursday, September 1, 2011

The 504 Meeting: Every Child's Right to an Education

We had our first 504* meeting of the school year yesterday. In August! Yay! Jack started school two weeks ago, and normally they like to wait a few weeks for a new teacher to get to know the student, but I really pushed for a meeting as early as possible so we could establish some ground rules before things have the chance to go downhill. Better to get some agreements in place early, than having to do damage control later.

Charlie and I spent a lot of the summer reading and preparing for the school year, deciding which issues were most important to address this year. PE will continue along the same path we established last year: he'll participate in everything he's able to, but the PE teacher will allow him to be a coach or her helper during any activities which are too competitive (ie. liable to provoke meltdown-inducing frustration). Aside from PE, our biggest issue is with the dreaded H-word: homework!

Almost exactly a month ago, I read this fabulous article by Elise Ronan, posted on the Special Education Advisor web site: Homework for Children with a Disability. Referring to any child with Autism Spectrum Disorder or ADHD, Ronan says,
"After keeping it together all day in a very challenging environment the child then comes home to hours of extra work . . .
"They walk in the door and absolutely let loose. It can be a fit about anything. It's not really the object of their ire but rather the releasing of all that pent up tension that they have felt all day." 
I like to use the expression "Lightbulb Moment." Reading this article was one of those, maybe even a giant Spotlight Moment, with a dash of thunder and lightening thrown in for effect. This explains the tears, the tantrums, the whining! From the moment Jack gets into the car at the end of the day, he's already stressing about how much homework he has to do. "I'll never get it done! I'll be working on it for hours! Mrs. X is torturing me!"

As much as I try to convince him that it'll be okay--we'll look at it and figure out what needs to be done, I'm certainly not going to make him do homework till midnight and no, Mrs. X is not determined to torture him--he's simply overwhelmed by the thought of having to do more schoolwork after having been in class for seven hours already, as well as by the volume of work required. The policy at Jack's school is 10 minutes of homework per grade level. This year he's in 6th grade and expected to be able to complete 60 minutes of homework per night. There's the problem. He's just not.

After having talked to Jack's doctor about the homework issue at his last appointment, I sent him an email and asked for his support before going to our 504 meeting yesterday. He very kindly sent this response:
"I am in support of a modified homework plan for Jack based  on his disabilities of Autism Spectrum Disorder and ADHD.  I recommend this be part of the discussion for his IEP. Jack is currently able to complete only 20-30 minutes of homework nightly."
With doctor's note in hand, we went into our meeting yesterday morning. A doctor's note is a very powerful thing to have. I highly recommend it. It's like Kryptonite. After handing over a copy of Dr. M's email, both the Vice Principal (the administrator in charge of children with special needs at our school) and Jack's teacher agreed to negotiate a modified homework schedule for Jack.

As of now, Jack is only required to do half of the assigned math problems (focusing especially on the word problems). We will still do our best to get through his vocabulary and grammar assignments, which are easier for him, but we sit at the computer and read the questions together. He gives me the answers, and I type them up and print them out. Part of what was overwhelming him was the amount of writing required to complete his work. Writing twenty sentences out by hand seems like a lot of work to him. It's so much faster and easier for me to type it for him. He's still learning and coming up with the answer, but he doesn't have to do the tedious (to him), time-consuming writing by hand.

Whew! What a relief for all of us! No more meltdowns. No more tears and tantrums. No more losing my temper with him. He's still learning and completing his coursework, but with much less frustration and stress for everyone. We're hoping this plan will help him to better cope with his assignments and make for a more successful year.

*For those not familiar with Section 504 of the Rehabilitation Act of 1973, it refers to the rights granted by Federal Law to students with disabilities. Section 504 bars discrimination on the basis of a disability and guarantees a child's right to an education, despite their disability.

Friday, August 26, 2011

Disaster on our Doorstep

Photo courtesy of Debbie Brown Photography
We had a brush with disaster this week in our sleepy, little Northern California town. On Tuesday afternoon, only three miles from our home, a railroad tanker car containing 29,000 gallons of propane fuel was being inspected when a spark ignited it. The inspector was taken to the hospital for burns, but later released. Homes and businesses within a mile radius of the tanker were immediately evacuated, putting approximately 10,000 residents out of their homes for two and a half days, from about noon on Tuesday until midnight Thursday night. All of the schools in town, which had been scheduled to start on Wednesday, were closed until Monday.

The potential for disaster was real and scary. Firetrucks sprayed 5000 gallons of water per minute on the tanker car to keep it cool, hoping to avoid an explosion. An elite crew was flown in Tuesday night from Houston, Texas, to advise local firefighters on the best and safest way to proceed.

I hadn't previously heard of a similar incident (which ended much worse) in Kingman, AZ, on July 5, 1973, but learned all about it from links provided by news sources. We became familiar with the horrifying acronym "BLEVE" (Boiling Liquid Expanding Vapor Explosion) and why firefighters were working so vigilantly to prevent it from happening in our town.

As we watched events unfold on TV and exchanged information on our neighborhood Facebook site, I wondered what it would have been like had we been just two miles closer and ordered to leave our home.

As a child on the autism spectrum who has difficulty with change or any disruption to his routine, how would Jack have handled being asked to leave his familiar surroundings, his possessions, his PS3? We had a power failure last December that lasted a couple of hours. He nearly had a panic attack from being deprived of his electronic stimuli just for that short period of time. Two and a half days would have been a real struggle for all of us.

As we were riding in the car with friends, my girlfriend mentioned the possibility of the tanker exploding and how devastating that would be. Immediately we heard a voice in the back seat, "It's going to EXPLODE?!" I did my best to explain to him that the firefighters were working as hard as they could to keep it from exploding and to keep everyone safe. I assured him that our house was far enough away from the site that we would be safe, along with Cookie and Buddy (our dogs).

Any parent knows how important it is to remain the face of calm and composure for your child in a dire situation. They look to you for reassurance and comfort. How are they going to get that from you if you allow yourself to fall apart? With Jack it's especially important, because he has a tendency to overreact. He freaks out over a fly in the house. He thinks he's going to bleed to death from the tiniest scratch. That's why I always have to try and be strong even if I feel like crying sometimes. There have been times when I'm thinking on the inside, "Oh my freaking gosh! That's a really deep cut and an awful lot of blood! Deep breaths!" But on the outside I'm saying to him, "It's not that bad. We'll fix you right up. Don't worry." I'm not allowed the luxary of losing it. He would be terrified knowing I was scared.

My heart went out to those who were kept from their homes, many of whom hadn't had time to get medications, a change of clothing, beloved pets. Some were away from home at the time, shopping or at work, and hadn't been able to make sure their pets had adequate food and water. Multiple agencies cooperated to keep everyone safe and cared for: Lincoln Police Dept., Rocklin Police Dept, Placer County Sheriff's Dept., California Highway Patrol, Cal Fire, the Red Cross and many others. Animal agencies were helping people get in to care for their pets and providing a safe place for them to stay, as animals weren't allowed in the three evacuation centers.

As scary as it was, it was really wonderful to see a community come together and help each other get through a very tough time. I'm proud of my town and my neighbors. I'm thankful for all those who did their jobs and averted a disaster, even though it meant endangering their own lives. It's been quite a week.

Photo courtesy of Debbie Brown Photography

Tuesday, August 16, 2011

Meet the Teacher: 6th Grade is A Very Scary Place

For the past several weeks, there's been a dirty word in our house. Every time anyone's mentioned the word "school," Jack fires back, "I hate school! I don't want to talk about school!" Whenever we see a commercial on TV that mentions "Back to School," he wails, "Why does everything have to be about school? I hate school!" As much as we've been trying to reassure him that Mom and Dad are going to do everything we can to make sure he has a good year, he was still insisting he hated school.

Today was "Meet the Teacher" day. We were supposed to be at school between 2:00 and 3:00 to meet his new teacher. I kept trying to build it up as, "Yay! We get to see your new classroom. Meet your new teacher. See your friends!" He wasn't buying any of it. "Why can't you just go without me? You go meet the teacher. I'll meet her at school tomorrow."

This was my cue to begin the lecture I've been honing since first grade, "We need to be positive! It's going to be a great year! You're going to be at the top of the school! 6th grade! It's going to be awesome! You're going to have so much fun!" Nothing. He finally got dressed, brushed his teeth and hair and got in the car like he was going to an execution.

As we got out of the car and were walking onto campus, he was finally able to tell me what was bothering him so much. "Mr. D [one of last year's 6th grade teachers, who's since gone on to another school] said that 6th grade is harder and stricter than 5th grade." Suddenly I got it! He's scared! He's afraid he's not going to be ready for 6th grade.

"Oh, no! That's not true," I assured him. "All the teachers you've had up until now have prepared you for 6th grade. You're ready, along with all your friends. You're so smart! You're going to have a good time this year and you're going to learn so much!"

When we met his teacher, she was very kind and smiling. I told her that Jack was a little worried. "Oh, no!" she said, "you don't need to worry! You're just a kid! Nobody expects you to know everything. That's my job. To teach you. Let me do the worrying!" 

All summer I thought he was resenting going back to school cause he'd rather stay home and play video games (who wouldn't?), but really he was scared. How did I not know that? The thing that makes me angry is that the teacher who told him 6th grade would be hard, thought he was motivating kids. Little did he know he nearly paralyzed ours!

For every child, a new teacher, a new classroom, a new schedule are a challenge. Even more so for a child with autism who struggles with transitions in general. Why on earth was it necessary to add fear into the mix?

I'm just so grateful he was able to tell me that he was afraid, so that I was able to reassure him that everything would be okay. I'm even more grateful that his new teacher was so kind and understanding with him. And she's pretty, too!

Because he's so bright, I sometimes forget that he's special too. I forget my own description of him that I wrote in Love Letter for My Autistic Child:

Sometimes "I won’t" only means "I can’t."

Coming home in the car, he was a totally different child. Chatty. Animated. The weight of the world had been lifted off his shoulders. I think he's looking forward to the first day now. Maybe 6th grade isn't such a scary place after all!

Monday, August 8, 2011

Autism: Being the Child on the Outside

My son Jack has autism. We only found out he had autism a couple of years ago (when he was 8 1/2), and even then nobody ever actually said the "A" word to me. I was told he had PDD-NOS (Pervasive Developmental Disorder--Non-Specific), SPD (Sensory Processing Disorder) and ADHD (Attention Deficit/Hyperactivity Disorder). It was another year or so before I understood that PDD is autism.

Suddenly everything made sense! The sensitivities, the meltdowns, the food issues, the behavioral problems at school. Suddenly we gained a much better understanding of why our child is the way he is, and have continued to learn as we've read and shared with other parents of children like ours.

Two and a half years before Jack's diagnosis, we bought a house in a brand new neighborhood and moved out of the apartment we'd lived in since Jack was three. Suddenly he had a yard to play in. And there were other children outside to play with, too! There were several other families on our street with kids his age, even two sets of twins. He was thrilled!

Every Saturday morning he would wake up and couldn't wait to get outside to play with the other kids. I would have to insist that he couldn't go ringing doorbells until at least 9:30 or 10:00, cause some people actually liked to sleep in on Saturdays. He would lurk on our neighbors' porches or on the sidewalk in front of their homes, waiting for their blinds to open so he'd know they were awake. One mom even told him (rightfully so) that he was only allowed to ring her doorbell once a day! He was so anxious to play with the other kids that he was starting to make a pest of himself.

At first everything was fine, but then we started to notice problems. He started coming in the house crying that someone had called him a name. Someone had called him "Loser" or "Retard." I would see kids try to run him over with their bikes or scooters. For some reason the other kids started ganging up against him. They decided it was fun to provoke him, since it was pretty easy to get his goat (his doctor calls it "low frustration tolerance"). They thought it was funny to make him mad, but then when he'd lash back, usually in some physical way or with inappropriate language, the parents of the other kids labeled him the Bully. The other parents didn't seem to understand why it was such a big deal for the kids to tease him and provoke him. That's just what kids do, right?

After a while the little boy down the street who seemed to be his favorite playmate (a couple of years younger than him; Jack has always seemed to get along better with younger kids) would just answer the door and say, "Go home!" One day his bicycle was taken and hidden all afternoon. It was only returned when my husband threatened to make a police report. Then all the kids on our street decided to have a club. Jack was not allowed to be in the club, and the only rule of the club was that you couldn't play with Jack. My husband decided that he and Jack would have their own club. They sat on our front porch for an entire week, glaring at the other kids as they rode their bikes back and forth in front of our house.

I tried talking to some of the other parents, but they just didn't understand the problem. They thought the kids were just being kids, and it was Jack who was the "bully," right?

About a year ago, one of the little girls started a nasty rumor about Jack having something inappropriate on his cell phone. My good friend, whose daughter loves Jack and is a good friend to him, heard this rumor from the girl who started the story. Despite the fact that this would have been way out of character for Jack, the first thing I did was to look in his phone and see if there was any truth to the story. Nothing. Then I asked the little brother of the girl who started the story (who happened to be at our house playing) if Jack had ever shown him anything inappropriate either on his phone, the computer or anywhere else (you never know). This little boy told me, "Oh yeah, my sister made up that story! It's not even true!"

When I sent an email to one of the moms whose child was spreading this story, this was her response, [her child] "came to me, around the beginning of this month, and said he thought he saw a penis on Jack's phone. When he had asked Jack to see it again, because he wasn't quite sure, Jack shoved his phone in his pocket and ran away." Okay, I can understand that. Jack was embarrassed and didn't know what to say. Communication issues and social awkwardness, anyone? Not wanting to get into a war of words with this mom, I gave up and let it go. What's the point of trying to convince someone who's going to believe what she wants to believe?

So for the last year we've pretty much been hermits, hibernating in our own house. Last summer Jack spent the entire summer creating his own video game on the computer. This summer he's spent a lot of time playing with online friends on the PS3 and making videos for his YouTube page. We make play dates with his school friends (he goes to a charter school outside our neighborhood), and he enjoys the friends he's made and activities with his Sunday school group, but otherwise we keep to ourselves. He also has one very special little girl who lives a couple of blocks from us and is still his friend, even though she catches heat from the other kids for it. We just try to ignore the kids on our street.

But then a couple of nights ago, we were just sitting in the house minding our own business when BAM! The dogs started barking and my mom goes, "What was that?" I looked out the front window and saw water all over the front porch and little pieces of orange latex. A water balloon? Really?! I looked across the street and saw all the kids huddled behind the SUV in their parents' driveway, looking toward our house. I waited a few minutes and when I saw one of them walking back this way with a balloon in her hand, I stepped out on the porch and warned her, "Throw one more water balloon and I will call your mother! It's not funny and it's not nice, so you can stop." Okay, I yelled at a little kid. I'm just so tired of the meanness.

I feel so sad when I look out the window and see them all playing outside. I wish Jack could be a part of the group, but it's best just to keep him in. We've had far less drama, tears and sleepless nights (me) since we decided to withdraw from the neighborhood. I know this might not be the healthiest way to live, but you do what you need to do to protect your child.

I've heard from other autistic families about how "neurotypical" children often recognize and ostracize children who are "different." Yes, my child's a little different. But he's still smart, funny, loving and worthy of respect. They're the ones missing out on knowing such a sweet boy. But my heart still hurts for him.

Friday, August 5, 2011

I have special needs because . . .

Jack & Cookie
I have Autism. I am not like other children. I am not able to filter the sounds, motions, smells and activities going on around me. I do not like to change from one activity to another. I get very frustrated when I'm asked to stop doing what I'm focusing on and move to something else. My teacher (and my mom!) has to give me several advance warnings that a change is coming soon, or I will lose it. It is not a tantrum and I am not misbehaving. I am on overload, and when I am on overload my brain kind of short-circuits and I lose control of my behavior.

I do not like things that happen suddenly. I can't go to a 3D movie because I'm afraid things will pop out at me unexpectedly and startle me. I can't make toast for myself cause I'm afraid of the toaster. You just never know when the bread will pop up and it makes me anxious.

I do not like the way some things feel. I have difficulty washing my own hair or my hands, because I do not like the feel of the soap. I tell my mom, "It makes me feel like I'm going to die." Nothing she can say makes it any better.

I do not like to tie my shoes. I can do it, but it's really hard and takes a long time. Sometimes my mom has to help me tie a double knot, so my shoes will stay tied all day. I always try to slip them on and off without ever having to untie them.

I do not understand when people tease me. It hurts me and makes me sad when they call me a "loser" or say mean things to me. My mom tries to explain that sometimes people are just playing with words and they don't mean to be hurtful, but sometimes I still cry. I don't know what to answer when they say their mean words, so sometimes I just say nothing at all. Or say the worst thing I can think of, which is usually a bad word and then I get in trouble for using bad words.

I can't eat the same things that other people eat. Aside from having an allergy to cow's milk, things that other people think are tasty and delicious smell terrible to me. I only like plain things (white rice, grilled cheese, a quesadilla with only cheese, spaghetti with red sauce without any chunks in it, a hot dog with no ketchup or mustard). Things with a funny texture, taste or smell can make me gag, so I don't like trying new things. I stick with what I know. My mom worries that I don't eat enough.

I am terrified of bugs! I can't walk barefoot on the grass, because there could be bugs. Also the grass feels funny. I never go barefoot outside, even on the patio. I don't like the way it feels. Also about the bugs? I get upset when a fly comes in the house. I don't like the way they buzz up close to you and fly around your head. It makes me panic. Once there was a fly in the car and my mom had to stop the car and get it out. I wasn't able to deal with the fly in the car. I hate bugs.

I like school mostly. I have nice friends there and I like to talk to them at recess. But sometimes my teacher wants me to do things I don't understand or things that are boring. She talks and talks, but sometimes her words don't get into my head. Sometimes they just land around my desk and I don't know what they mean.

The thing I hate most about school is homework. After being in school for seven hours (that's a really long time), trying to be on good behavior and pay attention to all the things I'm supposed to be doing, I'm really tired. My brain is tired. The thought of coming home and doing more school is really terrible to me. Sometimes I get in the car at the end of the day and cry because I have too much homework, even though it's the same as everyone else. I just feel overwhelmed by it. That's why I always try to finish my homework at school, so I don't have to take it home and do more school. Last year my teacher would let me stay a few minutes after school to finish my homework so I didn't have to take it home. Then I would call my mom, who was already in the parking lot waiting for me, and say, "I'm not in trouble or anything," cause I know she worries about that stuff, "but is it okay if I stay after and finish my homework?" She always says yes.

I need to have special PE, cause anything competitive is upsetting to me. My doctor says I have a "low tolerance for frustration," so it's easy for me to get frustrated when I'm not good at things. When my PE teacher tells me, "RUN, Jack!" it feels like she is yelling at me and I don't like it. Running is hard for me. I'm kind of awkward. I'm very tall and skinny for my age, but I am not athletic. I don't enjoy sports, but I'm really good at video games and doing stuff on the computer.

I have special needs, but I am still a special person. I am very loving, affectionate, funny and smart. I love my two dogs, Buddy and Cookie, so much that sometimes when I hug them I get tears in my eyes and say, "Why are my eyes watering?" I love my mom and dad and my grandma, who lives with us. I love Jesus and God and all my friends. And especially Cookie and Buddy. They don't care that I have special needs.

Jack & Buddy

Friday, July 29, 2011

My Incredible Shrinking Child

This is fun, but you don't expect me to eat any of this, do you?

A couple of months ago I wrote a blog about Jack's food issues. At that time he'd just been to the doctor's and measured 5'2" and 91 pounds. Last week he went to the doctor's again (monthly visit). This time he measured 5"3" and 90 pounds (with all his clothes on). This morning on our scale at home he weighed 86 pounds!

The problem is he'd rather design and play video games than eat. He gets so fixated on what he's working on, that he's not interested in food. In addition, he has a very narrow range of foods he'll eat. Sometimes I'll fix something I know is a favorite and he'll eat a couple of bites, then tell me, "It tastes funny." Or make an attempt at a few bites and then say, "I'm full."

People who have children who eat normally--who come and tell them they need a snack when they're hungry--will judge me for this. I can't tell you how many times I've been told, "Just make him eat! Make him sit there till he cleans his plate." That just seems so cruel to me. If he's really not hungry, how can it be a good thing to force him to eat? Won't that just make the problem worse?

I've been at other people's houses and heard their children call, "Mom! I'm hungry!" This is a cry rarely heard in our house. Even when he was a toddler, I would have to remember to feed him now and then. While my friends' children would go to the refrigerator and indicate they wanted something to eat, my son never did that. He's just never been that interested in food.

This is such a foreign concept to me! I've always loved food and have battled my weight most of my life. My problem is I that love and am willing to try just about everything, while Jack is extremely suspicious of anything new or different. Even things I think he'll love if he'd just try them. I can't tell you how many times I've struggled just to get him to taste something new. Forget the "no thank you bite." Not gonna happen.

Once on a vacation trip when he was 7 1/2, my friend tried to bribe him by offering to buy him a DS (which he wanted more than anything else in the world at that time) if he'd only taste what she was offering. Still wouldn't do it. "But will you still buy me a DS?" he asked. When she explained to him that that wasn't the deal, he cried (and she felt really bad about it!) but she was right. That wasn't the deal.

I've really been trying to push the snacks and the extra glasses of (soy) milk the past few days. I even gave him a root beer float last night for dessert, a particular favorite. I'd even be tempted to try Pediasure, if I thought he'd actually drink it, but I don't see that happening.

In this age of so much childhood obesity, I find it kind of ironic that we have the opposite problem in our house. I know I'm not alone in this. Anybody else have a child with super-sensitive tastebuds who's a challenge to feed? Any suggestions for getting some extra calories into him?