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

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!

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.

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

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? 

Diagnosis: It's Just the Beginning

Third grade was a really tough year for us. I'd been begging Jack's teachers and pediatrician for answers ever since kindergarten. Nobody seemed to see any cause for concern. Except for the fact that he was always in trouble. Except for the repeated trips to the principal's office and the damn Behavior Slips. He's always been such a sweet, loving little boy. Well, except for the giant meltdowns.

One day we came straight from a conference at school (both parents, two teachers and the principal--serious stuff) to a play date at the park. I was in tears because I had just been told that one of the other parents had decreed that they no longer wanted their child to be allowed to play with mine. And of course, the teachers couldn't tell me who it was, because they "aren't allowed to discuss other parents or children." Confidentiality and all that (but the other parents were sure as heck allowed to talk about me and my family, huh?). As I was describing Jack's behaviors to another mom, she gently suggested that I should, "Go home and Google 'Sensory Processing Disorder.'" I did, and it was as if someone had suddenly turned on the light in a dark room. I ticked off symptom after symptom that matched my son's behaviors. Now I had a new question: why did it take another parent (bless her soul, she'll always have a special place in my heart!) to diagnose my son, when I'd been asking his teachers and doctors about it for years?

The final straw came at the end of that school year. My husband Charlie, who'd instructed the school to call him first the next time Jack was sent to the office, called me around lunchtime and said, "You need to go pick Jack up from school. He's been suspended." Turns out he'd lost his temper with another child and tried to choke him. He was suspended from school for the last day and a half of the school year, and we weren't even sure if he'd be allowed back.

Though Charlie and I were devastated that he was suspended, Jack considered it an early start to his summer vacation. School was not a happy place for him. He cried and said, "I hate school!" every morning on the way there. It was a constant battle to try to get him to have a positive attitude and look forward to the fun things about school: his friends, art and music, recess.

Immediately following that suspension (who gets suspended from the third grade anyway?!), I made an appointment with Jack's pediatrician and showed him the list of SPD symptoms that Jack was exhibiting. Finally he did some more blood work (all negative) and referred us to a family psychiatrist. I made an appointment with a doctor a friend had used with her son, and we came out of that first appointment with a diagnosis of Sensory Processing Disorder and Pervasive Developmental Disorder--Non-Specific (later ADHD also). He gave us a prescription for impulse control, recommended some books for me to read and off we went.

My husband and I started a voracious reading campaign (see Recommended Reading list on this page) to educate ourselves as much as possible to help our boy. Even then, it was several months before I even realized that Jack had Autism. Nobody ever said the "A" word to me and it was a long time before I found out that PDD-NOS is on the Autism Spectrum. But the more I read, the more everything made sense. Knowledge is power!

The best thing about finally having a diagnosis is that now we know he's not a behavioral problem. He has a developmental disorder that causes him to respond (and overreact) to things in a certain way. If he's overwhelmed or frustrated, if everything gets too chaotic for him, he can respond in one of three ways: 1) he can get angry, 2) he can cry, or 3) he can retreat. Now we know a little more and can try to avoid situations that will demand too much of him or provoke an unwanted response. We have a legal right to special consideration, since he has a disability.

We're still learning, but now we have some tools to help us along the way. We have regular meetings with Jack's teachers, his principal and the school psychologist to help formulate plans for his success. We meet once a month with his doctor (a gentle, soft-spoken man we all adore). He has a team of people smoothing his way, including his Mom and Dad who are his biggest advocates. Next month he'll enter the sixth grade! We have high hopes for his final year of elementary school, as well the rest of his life. Diagnosis was only the beginning.

One final postscript: the boy who got choked, prompting Jack's suspension? He became one of Jack's best buddies in fourth grade!

Parenting Advice from Total Strangers

Saw this a few week's back on Laura Shumaker's blog and asked her if I could borrow it. Anyone who has a child on the Spectrum has heard all of this before. Very funny, in a slightly ouchy sort of way. Enjoy!