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