SB turned 11 years old yesterday! I love the happy little person that he is turning out to be. He’s worked so hard and come so far on this autism journey, and I couldn’t be more proud of him.
Instead of a traditional birthday party, we invited 3 of SB’s friends to come with us to a basketball game at George Mason University on a recent Saturday afternoon. He has turned into quite the sports fanatic in the last year or so, checking the baseball, basketball, football, and hockey apps on his iPod daily to find out what’s going on in the world of professional sports. Attending a game in person, with some friends, seemed like the perfect way to celebrate his birthday.
The game was a big hit and I think all of the boys (little brother included) had a really good time. GMU gave us quite the show that day, clinching the game by making the winning basket with only 1.7 seconds left on the clock! The rowdy pep band, the cheerleaders, the loud and crazy college students in the bleachers, and the hot dogs, pizza, and sugary Icee drinks all added to the fun. I don’t really have a big story from the event, but there were so many funny little moments from that day that I wanted to write a blog post and share them with you.
SB’s friend R was the first to arrive at our house, and he had a few humorous conversations with my husband before the others arrived. When Charlie said, “We’re really glad you could come with us today, R!” he replied with such a confident “You’re welcome!” that we both had to stifle our laughter. Another funny exchange went like this:
R: “Do SB and AB practice Tae Kwon Do at home?” (R attends the same Tae Kwon Do studio as my guys, but has a higher belt than they do.)
C: “Well, maybe not as much as they should.”
R: “What do they DO when they are home?”
C: “They do their homework, they practice the piano, they have some chores, and they like to play video games.”
R: “Hmm…You should have rules.”
My husband humored him and assured him that he would consider having rules for his children in the future!
The drive to and from the game was an adventure for me. With our large party, we had to drive two vehicles, and this left me alone in the minivan with SB and his 3 buddies. I tried to join in their conversations, but they didn’t seem to want to talk much to me! I guess Moms aren’t cool. Anyway, there were gross jokes, there were “Would you rather…” games, and there was belching. LOUD belching. Although SB is good at making friends with his extroverted personality, he can still be awkward in social situations sometimes. And on this day, he kept trying to make jokes about kissing. He joked about kissing R. He joked about R and P kissing each other. He joked about R kissing his sister. NONE of these jokes seemed appreciated by any of the other 11-year-olds in the car, yet the kid kept trying. Clearly, comments about boys-kissing-boys are not funny to most 11-year-old boys, but SB never really picked up on that. However, ALL 11-year-old boys find that singing the signature tune from “Frozen” at the top of their lungs with the altered lyrics “Let It Poop” is completely hilarious!
After the basketball game, we all returned to our house for the traditional “Happy Birthday” singing and donuts. (SB doesn’t like cake!) After eating, the guys wandered upstairs to play until their parents arrived to pick them up, and after a little while I heard SB playing his trombone! I shook my head, fearing that he was probably boring the pants off of his guests to show off his new band skills. I climbed the stairs, went to where they were clustered around SB, and asked, “Hey buddy! Did your friends say that they…umm… wanted to hear you play trombone?” Surprisingly, the other 3 turned to me with wide-eyes and nodded their heads in earnest. “Well, OK then!” I replied. “Carry on!”
One of my favorite moments of the day occurred on the way home from the game. SB usually likes to listen to music in the car, and he asked me to turn on the CD player. (The CD in the player at that time was an album by Rush, which both of my guys love, thanks to the brainwashing of my husband!) When SB listens to music, he likes to dance. And I mean DANCE! He bops back and forth in his seat, leaning left to right in time to the music, with such force that I can feel the van swaying. He’s been doing it so long that I’m used to the swaying and don’t even think much about it anymore. So he started to dance, and pretty soon the other boys started to tease him. “SB, what are you doing? That’s SO weird!” “Hey look! SB’s dancing like a penguin!” My heart sank. The day had been going so well, and yet now he was being teased by his peers who he so adored. But SB just took it in stride. “This is how I dance!” he announced as he continued to bop. He laughed, then they laughed, and within 2 minutes time, all four boys were in the back of my van, bopping back and forth to Spirit of Radio like four identical pendulums. “Look! We’re all dancing like penguins!” R shouted. I couldn’t believe it! My little guy has such an “I don’t care what other people think about me” attitude that it rubs off on others. He could have let that moment ruin his day, but instead he turned it around and the other kids were joining him rather than teasing him before they even knew it. I don’t think he does it on purpose. There’s just something infectious in his personality that makes people happy to be around him. I hope he never, ever loses that.
During my husband’s conversation with R before the other kids arrived, R asked, “Who else is coming today?” Charlie told him the names of the other boys that we were expecting, and R said, “Oh, I know them. I know ALL of SB’s friends. I know Taylor and Brandon and Jack and Kevin and…” He went on for a while, and after he had listed about 8 or 9 kids from their school, he stopped and said, “Oh, yeah! EVERYBODY is SB’s friend!”
In my attempt to get out the door this morning and get the boys to school, there was the usual fighting, bickering, and hitting. They fought and bickered and hit each other continuously from the kitchen to the garage to the van. As they buckled their seat belts and I started the van, SB yelled, “Stop it! Why are you always hitting me?” And AB replied, “Because we have a tism!”
“What?” I asked groggily as I put the van in reverse. “What’s a tism?”
“You know,” said AB. “Autism.”
Ohhhhhhhhhhhhhhhh. I put the van back in park. Why do these “you must stop and talk about it right now” moments always happen before my caffeine has kicked in? Moments like “how do babies get inside their mommy’s tummies?” or “how long does it take to get to heaven?” These questions always seem to come early in the morning when my brain is still foggy.
We have talked to the boys about autism, and we read them this book: “I Have Autism: A Child’s First Look at Autism” by Pat Crissey. It does a really good job of explaining autism in a very simple manner. We aren’t shy about using the “A” word at our house at all. But honestly, the guys hardly ever talk about it. SB does talk about how his ADHD meds make him feel, and that he can tell that he feels differently when he doesn’t take them. But neither of them talks about how they have autism, and sometimes I wonder if they even hear me when I bring it up. Clearly, they do.
“Yes, that’s right.” I said. “You both have autism. This does make some things hard for you. Can you think of some things that might be hard for you because of autism?”
“Let’s just go let’s just go let’s just go…” said SB. It’s 7:15, we’re sitting in the van, the van is running, and we’re supposed to be backing up and leaving for school. He HATES it when I stop and talk to them when we are supposed to be leaving. It’s 7:15, for crying out loud! 7:15 is when we leave. God, Mom, don’t you know that?
“SB, I just want to talk about this for a few minutes, OK?” I said.
“Taking tests is hard for me.” Said AB.
“Really?” I said. “I think you do pretty well on tests. You’re doing great in school. I was thinking more about how it’s hard for you to go up to other kids and ask them to play with you.”
“Oh yeah. That is hard for me,” replied AB
“Let’s just go let’s just go let’s just go…” Poor SB just can’t stand it.
“And sometimes I hit SB,” said AB
“Yes, well, that’s not because of autism,” I said. “That’s just because he’s your brother and you annoy each other!”
AB laughed. SB moaned again, “Can we just GO?”
“And SB, I know that school work is sometimes hard for you. Like language arts and reading. Isn’t that hard for you sometimes?” I asked.
“Yes. Because of autism. I don’t like it. I don’t like autism,” he said.
I sighed. “I don’t always like it either, buddy. But you know what?” I paused and made sure he was paying attention. “Autism also makes you really, really cool.”
I looked right at him. I wanted this to be a moment. One of those sweet, tear-jerking moments that I could blog about that would pull at everyone’s heart-strings.
“No, I’m not cool. CAN WE JUST GOOOOOOOOOO?!?!?!?!?!?!”
OK. So it wasn’t a moment. Oh well.
I knew I was pushing it at this point, and that I’d have a meltdown on my hands if I didn’t start backing up soon. So I put the van in reverse, turned on the CD, and drove the guys to school.
That’s what’s going on here at the Burts house, folks. We have a tism. And we don’t always like it. But sometimes in life, even if you don’t like your situation, the best thing to do is to “just go!” Because you’ll get through it, tism and all.
Recently I spoke to the fourth graders at SB’s school about autism, and it went better than I could have imagined! The kids were interested and engaged throughout my presentation and asked thoughtful questions. I think it was a very positive experience, and I hope they were left with a better understanding of SB and of anyone they meet in the future who is different. I really wish I could have written about it right after it happened so that it would still be fresh in my mind, but alas, life gets hectic and all of the sudden it’s three weeks later! But I finally have a few minutes to myself while traveling with the Air Force Band, so I’m going to try to capture it for you now.
First, let me say that the people at this elementary school are wonderful! The fourth grade team, the guidance counselor, and the administration were all very accommodating and let me come in and say exactly what I wanted to say. I couldn’t have asked for a more supportive environment.
Initially, I wasn’t sure if SB should be there for the presentation or not. I talked to him about it at home, of course, and he said he was OK with me doing it. Both our ABA provider and the school guidance counselor felt that it would be best if he was not there, so we decided that he would go visit his former second grade teacher as a helper while I talked to the rest of the fourth grade students. Since that teacher is currently AB’s second grade teacher as well, AB was a little bit miffed when he was told that his brother was coming to visit his classroom. “What?!? Why is HE coming HERE?” I guess he didn’t want his brother invading his world at school!
When I initially approached SB’s classroom teacher, I asked if I could speak to all three fourth grade classes and not just his class. I wanted to do this because, as I’ve mentioned before, SB is an extremely social guy. I think he knows EVERYBODY in the school! He certainly knows all of the fourth graders, and they all know him. They mix up the fourth grade students for math and also for physical education and music, so most of the fourth grade students are with him at some point in the week. I really felt like it would be beneficial to talk to all of them. That is, until the morning of the presentation when it hit me that I would be addressing almost EIGHTY KIDS!!! What was I thinking? That’s a lot of curious little eyes staring at me! I have to admit, I was pretty nervous that morning, wondering if I was doing the right thing and if I was going to make things worse for SB rather than better.
The entire concept of my presentation was borrowed from a blog post by a woman named Mary McLaughlin who has a blog called “MOM – Not Otherwise Specified.” She spoke to her son’s 4th grade class a few years ago and wrote about it here: A hair-dryer kid in a toaster-brained world. You should read her post. Really. It’s bloody brilliant. (Did I just say “bloody brilliant?” Can you tell we’ve been watching a lot of Harry Potter movies at my house?) She bases her explanation of autism on a single analogy, where she asks the students to imagine that most people in our world have brains that work like a toaster. Therefore, making toast in our world is the most important thing to be able to do. Then she asks the students to imagine that the brain of an autistic person is like a hair dryer. And although hair dryers are useful and work perfectly well, it’s pretty hard to make toast with a hair dryer. I just love this analogy, because it emphasizes that a person with autism has a brain that works DIFFERENTLY. It’s not better or worse. Just different.
Here are the PowerPoint slides that I showed to the students, and a little summary of what I discussed.
After introducing myself, I started with this question: What is a disability? I read the second slide to them, and then I asked them to give me examples of disabilities AND what a person with that disability needs to do differently than they do. Naming disabilities was easy, but the second part took a little prompting on my part. For example, one student said, “Being blind!” “Yes!” I said. “Blindness is a disability. Can a person who is blind read books?” “NO!!!” came the chorus of kids in front of me. “Of COURSE they can!” I replied. “They can read books that are written in braille. They feel the words rather than seeing them. So, yes, they CAN read. They just do it differently than you do.” After a few examples like this, I think they understood. Then I told them that I wanted to talk to them today about a specific disability called autism, and that the reason I wanted to talk about autism today is because SB has autism, and I wanted all of them to understand autism, and SB, a little bit better. At this point, the room became silent and all of the beady eyes staring at me got really big. I’m fairly certain that they all knew that SB was different, but I bet most of them didn’t have a name for it or understand why. I’m so glad they seemed to want to know more! I also took a line from Mary’s post and told the kids at this point how much SB loves them, how much he talks about all of them, and how much they mean to him. Because it’s true.
I thought that the most important thing before I really got going was to assure the students that people who have autism are born with it, that you cannot catch autism from someone else, and that if you don’t have autism now, at age 9 or 10, you never will. I wanted to just put those worries to rest right away!
At this point I used Mary’s explanation almost verbatim, explaining that the brain is a machine and that it controls everything that we do. I’ll just summarize this part here, because you’ve already read this description in Mary’s post. (You haven’t read that yet? Well, then scroll back up to the link and read that right now!) I asked the kids to imagine that their brain was actually a toaster, and we discussed what our pretend world would look like if everyone’s brain was a toaster. The most important thing to be able to do in this world would be to make toast, of course. Then I had them imagine that SB’s brain was a hair dryer, and tried to emphasize to them how difficult it would be to have a hair dryer brain in this imaginary world we had created where everyone else is a toaster.
This is where I talked about the things that our society thinks are important, because most of us are good at these things. But these things just so happen, because of autism, to be the very things that SB’s hair dryer brain has a really hard time doing.
Then I mentioned that there are some things that hair dryer brains can do better than toaster brains, such as dry wet hair! And also, there are some things that SB’s brain is really good at doing. These are things that his brain can do a lot better than most of our toaster brains can do. I asked them to come up with some things that SB is really good at doing.
“Multiplication!” Math – yes, I expected this answer.
“Playing the recorder!” Music – yes, I expected this answer.
“Remembering stuff!” Memory – yes, I expected this answer, too.
“He’s a really, really good friend!” And this was followed with lots of nodding and affirming “Mm-hmms” and “yeahs.”
I almost lost my entire train of thought here. Really – I just about cried. This is what stands out to them? That SB is a good friend? After all the worrying I’ve done in the 8 years since his diagnosis that he wouldn’t be able to make friends? This was by far my favorite moment of the entire morning. I think my heart grew 3 sizes right there.
After that, we talked about some of the things that make SB just like any other kid, like how he loves to play video games and likes to eat macaroni and cheese. Then I told the kids that I wanted to focus on a few ways that SB is different from them to help them understand autism.
When I asked the kids if they had ever seen SB panic, they all nodded and there were lots of “Mmm-hmms” throughout the room. So I talked about how the brain controls the senses, and that SB’s hair dryer brain senses work a little differently than their toaster brain senses. I had them list some of the things that they might hear in a regular classroom, such as the teacher’s voice, a loud class in another room, lights humming, a lawnmower outside, etc., and how their brains know how to filter out the sounds that are not important to focus on the sounds that are important. People with autism can’t always do that.
I played this short video for the kids, stopping it after Carly’s Dad says, “How can I help?” I think this video, developed by Carly Fleischmann, is really well done, and helps portray what it might feel like to be in a crowded place and have autism.
Then I explained to the kids about how your senses send out “DANGER” warnings to your body when you are in danger, like if someone jumps out at you and scares you. These danger warnings cause your heart rate to go up, your breathing to get faster, and you probably have an impulse to run away. Sometimes, I explained, SB’s brain sends out these “DANGER” warnings to his body when he gets stressed, but is not actually in danger. This is what causes him to panic in situations that don’t seem like a big deal to others.
To explain this one, I told them about how Carly Fleischmann (from the earlier video) describes how her body feels like a can of soda pop that someone has shaken up. And she feels like she can’t help it – she just needs to let out those bubbles before she explodes. I think that’s why SB, and a lot of people with autism, move in ways that sometimes look unusual to us toaster brained people. When SB gets really excited or happy, he just can’t help but jump up and down and sometimes even flap his arms. He’s just opening the can of soda pop to let out those bubbles before they explode. I think this also helps explain why he fidgets a lot with his hands. He can’t help it – he just feels like he needs to move his hands all of the time because of that soda pop feeling.
When I asked the kids if they had seen this behavior in SB, I was pleasantly surprised to see a lot of their heads shaking “no.” It seems this issue might not be as bad as I thought. I still talked a little bit about how being flexible is hard for people with hair dryer brains, particularly if the rules change or are different than they expect.
I borrowed this answer from Mary’s post as well. I told the kids that SB will always have autism, but he won’t always be exactly the same way he is now – just like they won’t always be exactly the same way they are now. And that as he grows up, SB will keep finding new and better ways to make toast with his hair dryer.
At this point, I talked about how there are lots of adults with autism who are doing important things in the world, and I introduced them to Temple Grandin. I explained to the kids how Temple Grandin designs buildings for cows to live in, and that her buildings were different (and better!) than anything anyone had ever seen before. (I tried not to go into too much detail about how said cows are going to be slaughtered and eaten for future hamburgers!) (And yes, that’s me up there with Temple Grandin! Photo with a celebrity! Yay!)
By showing the kids some of Temple Grandin’s work, I tried to emphasize to them that the world needs people who are different, because people who are different might be able to make our world better using their different brains to solve problems in ways the rest of us wouldn’t have thought of.
I read this slide verbatim, and I hope that it stuck. Although I think that 99% of the kids at this school are awesome to SB, he does tell me about being teased sometimes. And I know that he will get teased throughout his life – I’ve known this since the day he was diagnosed. But it still breaks my heart when he tells me about it. Also, I know that every kid gets teased. I got teased when I was a kid. That doesn’t make it suck any less. Hopefully, the message on this slide will make a kid stop and think before teasing in the future.
My last slide was a picture of SB and one of his best buddies at a baseball game together last summer, and I ended the prepared part of my presentation by saying, “There is nothing more than SB likes than to hang out with his friends. Just like you!” Then I took some questions from the kids, which they were allowed to raise their hand and ask or write down on note cards. Here are some of the best ones:
“Where is SB now? Why isn’t he here?” This was the very first question, and it made me smile. I like that he was missed! I explained that we thought they would be less nervous about asking questions if he wasn’t in the room.
“Can he die from it?” Wow! I was happy to put this student at ease and explain that SB will definitely not die of autism.
“What happens when people with autism get angry?” Well, the same thing that happens who YOU get angry, I answered! He can get upset, but he will calm down eventually.
“How do people get autism when they are born?” Oh, kid. I wish I knew. I really wish I knew. I explained that many smart doctors and scientists are working on the answer to that one, but that nobody knows just yet.
“In lunch, SB plays a game with his hands, then when I try to play, he panics.” OK, this isn’t really a question, but I understand what the kid is talking about. Sometimes SB creates games in his head that he plays out by himself, and the casual observer would have absolutely no idea what he’s doing. I also know that when he plays like this, 1) He really doesn’t want anyone else to play, because only he knows exactly how the game goes, and 2) You cannot stop these games without causing a big tantrum. You just have to let him play it out. So, even though I understood what the kid wanted to know, this one stumped me. I didn’t really have an explanation that I could give on the spot. Thankfully, our fabulous ABA provider was also in the room with me, and she reminded the students about SB’s really good memory. She explained that when SB is playing like this, he is probably reenacting a movie or video game in his head, and because his memory is so good, he is probably seeing it exactly as it happened when he saw it last, as though it was playing on a screen right there in his head. And he doesn’t want to deviate from what he’s seeing, so if you come up and try to join in, you probably aren’t going to do it exactly the way he’s seeing it. She suggested that if they want to join in, they should ask him what they should do.
“Does AB have autism, too?”
Oh, Lord! I was not prepared for that one. I should have been. This isn’t that big of a school, and it shouldn’t have surprised me that someone would ask about SB’s younger brother. But it did surprise me. And honestly, I did not feel comfortable “outing” AB just yet. His second grade peers probably don’t think he’s really different. They just think he’s shy. However, you can’t spend 5 minutes with SB without knowing that he’s different, which is why I wanted to have this talk with the fourth graders in the first place. After a few uncomfortable seconds of me going “ummm” and “uhhhh,” SB’s teacher thankfully declared, “We’re not going to answer that today. Next question?” And we moved on.
Many of the note cards weren’t actually questions, but were declarations of what a good friend he is, or things like “SB=Awesome!” It makes me so happy to have these! At the end of the presentation, I felt really good about how it had gone. The teacher, the guidance counselor, and our ABA provider were all very complimentary. However, I was still a little nervous after I left the school and went back to work. How were things going to go for SB when he went back to class? Were the kids going to treat him differently? Was anyone going to facetiously call him “hair dryer brain?” Or were they going to be extra nice to him now?
I felt a little unsettled all afternoon, and was anxious to pick SB up after school to talk about it with him. “How was your day?” I asked him tentatively. “Awful!” he exclaimed. “My class lost recess for being too chatty!” I tried to probe a little more. “I’m sorry you lost your recess. Did your friends say anything about me coming to talk to them?” “Yeah,” he said. “They told me you were there. I have SOOO much homework! Spelling and math and social studies…” I kept trying to get something out of him, but the fact that I had been there to talk with his peers didn’t seem to matter to him at all. I don’t know why, but I was expecting some sort of big, watershed moment after my presentation. I was expecting his peers to be extra nice or extra mean or something. But for SB, the day was business as usual. And I guess there’s nothing wrong with that. Except that now I know just how many of his peers think “he’s a really, really good friend.” Maybe I got something a lot more valuable out of this day then they did.
I’ve been blogging here about autism and my children for three years now. I love writing about raising these often challenging children. It feels good and therapeutic to share these thoughts and feelings with others. It makes me happy when someone “likes” my page on Facebook or leaves a comment on one of my blog posts. It’s fun when someone contacts me for advice about their own children with autism. However, I must admit that sometimes, selfishly, I am a little disappointed that my blog hasn’t “taken off.” When I first started, I had dreams of my work being recognized and hailed by thousands of people. I fantasized about being asked to write for other websites, magazines, and maybe even getting a book deal. That would be followed by fame and fortune, of course. Then, there would be the Hollywood movie about my life, starring Reese Witherspoon as me and George Clooney as my husband. No, wait, I should portray myself. But my husband should still be portrayed by George Clooney… yes, that sounds good…
OK, maybe my dream wandered a little too far there. But seriously, I have noticed that my little autism blog does not have as many followers as some do. One of the blogs I read has over 36,000 followers on Facebook. Another has over 217,000. Why can’t I get readers like that? Is it because many of those bloggers are stay-at-home parents, and I am a working mom also pursuing a graduate degree, and therefore don’t have time to write as often as I should to be a relevant blogger? Is it because my writing isn’t nearly as interesting or funny as it seems in my head? Is it because there are literally hundreds, possibly thousands, of other blogs out there about autism? Is it because my children are actually doing quite well right now, so I don’t have very many challenges to write about? Is it because I am not following the current autism issues as closely as I should? Or is it because becoming successful in something like writing requires some amount of sheer luck? The answer is most likely “All of the Above.” And although it sometimes disappoints me, I’ve made peace with the fact that this little space on the internet is not going to make me rich or famous or get me a kissing scene with George Clooney. Writing is still fun and fulfilling on a personal level, so I’m going to keep doing it, when I can find the time and when something pops into my head that I want to write about.
And then, on Saturday afternoon, I met “Lisa,” and I wasn’t disappointed anymore. I had taken my guys to their swimming lesson at our local rec center. When it was over, they both came over to me, shivering and dripping all over me while demanding their towels. I sent them into the men’s locker room with their clothes and started toward the door to the women’s locker room. (This was the first time I had let them change in the locker room without an adult, and was a bit nervous about it, but my husband insisted that they have successfully changed and come out the other side of the locker room on several occasions for him.) A small voice said, “Excuse me? Have you ever given a talk at Child Find?” I turned and saw a woman I did not recognize who had just given her 5-year-old son to the swimming instructor that my guys had just left. I have never spoken at Child Find, but I have spoken to a workshop for parents of children with special needs sponsored by the Fairfax County Public Schools. And since Child Find is for preschool-aged children with developmental delays, I figured that she and I both lived in the same “special education” world. I told her that yes, I had spoken to parents of special education children, and I apologized for not recognizing her.
She assured me that we had never met in person, but that she had been to my talk and we had exchanged several emails. I don’t get a lot of email questions from people who have read my blog, but I get a few. As soon as she said her name was Lisa, I remembered writing to her. It was two years ago, and she asked a lot of questions about therapies, diets, and the county’s PAC program (Preschool Autism Class). She also expressed frustration that her son, age 3 at the time, was not making progress as fast as she had hoped. I know I advised her the way I would advise any parent – stick with the PAC program, do ABA if you can afford it, even if it’s only a little bit each week, and to be patient. I assured her that her son’s time already spent in PAC (6 months) was just a drop in the bucket of what would likely be years of therapy time, and that he would indeed make progress. It does get better. It just takes time.
During one of our email exchanges, Lisa used the phrase, “Once he catches up.” I responded with this: “I think you will drive yourself crazy if you keep telling yourself that at some point he will catch up and then you’ll be done, because that could be many years away. Of course he will make tons of progress over the years, but he may always need help with things like social skills and interacting with others. I am pretty sure mine will.” After a brief “thank you” message from Lisa, I didn’t hear from her again. “Well, good job, Mindy! You scared another one off!” I thought. I assumed I had been a little too harsh with her, a little too real. Told her something she didn’t really want to hear. I realized that, hell, I probably wouldn’t have wanted to hear that right after SB’s diagnosis, either. In giving my advice, I had momentarily forgotten about that early period when I couldn’t wait to just get him “fixed” so that he would be like other kids his age. I hadn’t remembered how many years it took to get me to where I am today, which is acceptance of a person will has difficulties, and will always have difficulties, but also has some incredible strengths and an amazingly charming personality that in no way do I ever want to “fix.” “This is why people don’t ask for your advice very often, Mindy,” I thought. “You’re really bad at it!”
Sitting there at the rec center on Saturday, Lisa told me how much my emails and advice had meant to her. She told me that it was very comforting to hear from another parent the assurance that her son would make progress, and that things would get better. (When I asked her if my advice had been too harsh, she said that it was not!) Then to my surprise, she started to get tears in her eyes as she told me how helpful I had been. I wanted to talk to her longer, but I realized that if my guys came out of the locker room on the other side of the pool and I wasn’t there, they would probably freak out. So I gave her a hug, (not something I usually do with someone I’ve just met!) and told her to email again anytime.
Then I sat outside the boy’s locker room and waited for my guys with a big, silly grin on my face. That felt really good. It feels awesome to know that I’ve helped someone, and that two years later, the person I helped still feels emotional about the conversations we had. I don’t need 217,000 people who truly want to hear what I have to say. I’ve got one. And that is enough to make me happy.
It all began in August of 2012, when my little guys went to a bug-themed summer camp at a local nature center. One of their counselors was a cute, teenaged girl named Callie. The boys had a great time at the camp and loved all the counselors, including Callie. The camp only lasted 5 days, and we haven’t seen her since. Yet that girl has absolutely NO IDEA what she unintentionally started!
Soon after the camp was over, SB sometimes started calling himself Callie. (Except now it is spelled Caly. I have no explanation for the spelling change.) He would often (but not always) correct us when we called him by his actual name, and we thought it was funny, so we played along.
Around this time SB also started trying to tell jokes. He was really bad at it, of course. Still is. One of his favorites was to answer the question, “When is your birthday?” with the date of May 11. His birthday is February 24. He thought this was HILARIOUS, and would giggle uncontrollably while the person who had asked him about his birthday just smiled, totally not in on the joke. It didn’t take long for these two behaviors to mesh, and soon SB’s birthday was February 24, but Caly’s birthday was May 11. This made things a little easier for us to understand, but we were still never exactly sure when we were talking to Caly and when we were talking to SB. We still aren’t, really.
This went on for several months, and then I noticed that SB was calling his brother as Mrs. Gulak, and AB was answering him. Since this was kind of weird, I asked them about it. “I’m Caly. AB is Mrs. Gulak,” SB answered, and then matter-of-factly went back to playing. After a little bit of research, I learned that Mrs. Gulak is actually the name of a retired elementary school teacher in the area who frequently subs at my kids’ school. Why AB took on her name, I’ll never know. But now my children regularly refer to each other as Caly and Mrs. Gulak when they are playing together. It’s especially funny that they do it even when they are angry at each other. Just imagine a 9-year-old boy yelling at a 7-year-old boy and saying, “Mrs. Gulak! You NEVER let me go first in Donkey Kong! I NEVER get to go first, Mrs. Gulak!”
The guys have a lot of stuffed animals that they play with regularly, using them to reenact scenes from their school day, Tae Kwon Do class, or other activities. It’s usually pretty cute, although sometimes the stuffed animals get scolded a LOT, and I’m horrified that this is what I must sound like to my children!
Once we accidentally left an important stuffed animal behind after a visit with my extended family, and this started a tradition still going on today where a few animals get left behind on purpose after each visit, and then my parents will email pictures back of all the trouble the animals are getting into.
Over the last year or so, the guys have started referring to certain stuffed animals as their “children.” Only a select few get to be in this category. Pretty soon, each animal that had been given the honorable distinction of “child” also had a birthday that I was expected to remember to celebrate. The details about their stuffed “families” continue to get more and more elaborate as time goes on. It’s funny to hear all of the crazy stuff that they come up with. It’s also really impressive that they can keep straight all of these made up details and keep them consistent. And then sometimes it’s all just a little bit strange! A few weeks ago, SB was telling my sister-in-law all about his alternate family, his children, and where they all live. She was tickled by all of it and she said to me, “You know, you really should write all of this down!” I realized that she was right, so that’s what inspired this blog post.
Last weekend, I interviewed Caly and Mrs. Gulak. The interviews were fascinating, and here is what I learned:
Although she goes by Caly, the full name of this woman is Kleen Parthie Caly.
Birthday: May 11, 1968
Address: 3112 Main Street San Francisco, CA (My sister-in-law and her family live in a nearby suburb with a house number of 3113. A long time ago, SB told me that he was going to live at 3112 when he grew up, so that he could live next door to his beloved cousin. I’m pretty sure that’s where this number came from.)
Marital Status: Married for 22 years to Mr. Williams (first name Scott, but he always goes by Mr. Williams. Scott is the name of one of their ABA therapists.)
Elijah – born January 23, 2006, age 8, 2nd grade, favorite food is pizza
Joshua – born March 28, 2006, age 8, 2nd grade, favorite food is corn dogs (I think that both Elijah and Joshua are named after children that SB knows from school.)
Wolie – born April 29, 2007, age 7, 1st grade, favorite food is watermelon (This is a stuffed Walrus that I’ve had since before my children were born. I named him Wally, but again, the spelling has been changed.)
Hearty – born December 5, 2008, age 5, kindergarten, favorite food is cantaloupe (This is a bear that has a small heart embroidered on his chest, which is how he got his name.)
Semcheski – born May 16, 2009, age 5, preschool, favorite food is applesauce (This is a stuffed Halloween bat named after a former art teacher at their school. I’m not sure if she would feel flattered or horrified to have a bat named after her, but if she happens to read this, I can assure her that it is an honor.)
Allergies: Elijah is allergic to pineapple. None of the other children have any allergies.
Church: The family attends Flower Embry Baptist Church in San Francisco
Caly plays the clarinet, but not in a band or orchestra. She only plays solos. Mr. Williams teaches 10th grade band. (It’s not too difficult to figure out where this one came from, since I am a clarinetist in the Air Force Band and my husband is a middle school band director. If only we all could just play solos!)
Family: Caly’s parents are Rachel, born December 8, 1948, age 65 and Joe, born December 11, 1945, age 68. (Rachel is the name of one of their ABA therapists. Joe is actually a good friend and former colleague of my husband’s who has a wife and child of his own. Not long ago we were at a party at their home, and SB announced for all to hear that Joe was his Dad. Can you say, “Awkward?”) Caly also has 2 siblings. Her sister Katie, who is 2 years older than her, has 2 children named Jason (age 13) and James (age 8.) (Katie is the name of the real Joe’s real wife. Getting confused yet?) Caly’s brother Robert, who is 4 years older than her, has no children yet, but his wife Judy is pregnant and the baby is due in 4-5 weeks. (I’m wondering if I was supposed to throw her a baby shower? Do imaginary personalities get baby showers?)
It crossed my mind to explain to SB that 2 of his children are only 2 months apart, and that it’s not biologically possible to give birth to children that close together. But I decided against it because: 1. His children are a rabbit, a pig, a walrus, a bear, and a bat. Biology seems irrelevant. 2. It’s possible that his children are adopted. And 3. I realized that going down that road could lead to questions about the reproductive system that I was not prepared to answer. So I let it go.
And on to the second interview!
Mrs. Gulak is what people call her, but her real name is Lydia Evens Gulak. (Lydia is not the first name of the real Mrs. Gulak, but it is the name of one of SB’s neighborhood playmates.)
Birthday: July 29, 1984
Address: 7465 Filthy Road Street Seattle, Washington
Marital Status: Married to Mr. Michul (pronounced like “Michael”), whose full name is Thamasett Cordish Michul. (Mrs. Thamasett is the special education teacher who works closely with SB.) Mr. Michul’s birthday is February 29, but he celebrates it on February 28 on non-leap years.
Tim – born January 25, 2006, age 8, 2nd grade, favorite food is chocolate cake
Panther Pig – born July 2, 2005, age 8, 2nd grade, favorite food is mixed vegetables (My husband is from Charlotte, so obviously he is a Carolina Panthers fan!)
Diddy – born June 28, 2006, age 7, 1st grade, favorite food is peas (Diddy Kong is the nephew of the video game character Donkey Kong. The Wii game “Donkey Kong Country Returns” was the ONLY thing my children wanted to do with their time for many, many months. This explains the reason Mrs. Gulak has a child named Diddy, and also why several of her children are pigs. In the video game, when you get partway through a level, there is a cute little pig that cheers you on, and marks your place so that even if you lose the life you are playing, you don’t have to go all the way back to the beginning of the level. You can start back at the last pig you passed.)
Emma – born January 10, 2008, age 6, 1st grade, favorite food is lima beans
Princess Pig – born November 29, 2007, age 6, kindergarten, favorite food is apples
Fluffy Pig – born March 21, 2009, age 5, kindergarten, favorite food is chocolate cake with cherry garnish
Emma is allergic to dairy. Princess Pig is allergic to all animals. (But is she allergic to pigs? I should have asked.)
Church: Woodland Hood Church
Mrs. Gulak is a band teacher at Guilty Pit School. She only teaches the practices, no concerts. Mr. Michul is also a band teacher. He works at Westside Middle and High Schools. He only teaches concerts, no practices. (Mr. Michul totally has the better deal, I think.)
Mrs. Gulak’s parents are Jim and Karie, who live in Nashville, TN. Karie is 28 and Jim is 57. (Jim is the name of my father, AB’s grandfather, and Kerry is the name of their ABA provider. I can only guess that is where these names have come from. And I didn’t have the heart to tell him that a 29-year-old woman cannot have a 28-year-old mother. Again, biology seems irrelevant here.) Mrs. Gulak also has a sister named Maddie who is 2 years younger than her. Maddie lives by herself in Great Falls, Montana.
Fluffy Pig is a bully. He is mean to the other children, regularly hitting them and calling them names. He gets into trouble a lot and does not treat other children nicely. He spends a lot of time in time out or missing recess.
Again, I can’t tell you how impressed I was during my interviews at how easily both guys were able to answer all of these questions about their alto egos and keep all of these details consistent. They have been talking about some of these pieces of information for as long as two years, and it always stays the same. SB could quickly and easily tell me the ages and birthdays of all of Caly’s family members, including the year of their birth. He didn’t have to stop and think about the ages or dates, because he already has it all committed to memory. For example, he had been talking about how Caly was 45 years old for several months. On May 11, 2014, he insisted that we all wish her a happy birthday, and then a week later I made some mention of Caly being 45. “No, Mom!” he corrected me. “I’m 46 now!” (So far the only things the birthdays have required have been a birthday wish and maybe a homemade card. I can’t wait until it is requested that my stuffed grandchildren receive a cake and a trip to Chuck E. Cheese.) AB was a little less fluid with his details. He knew by heart all of the birthdays of Mrs. Gulak’s children and how old they were, but he needed my help to use that information to figure out what year they were born.
Speaking of May 11, SB can really get out of hand with insisting that May 11 is his birthday. On this past May 11, which was a Sunday, my husband actually sat him down and told him, “You CANNOT tell people at church today that it is your birthday. They will believe you, and it is not the truth. It is a lie.” SB probably told some people anyway. Once he gets started, sometimes it’s hard to stop him!
Another cute thing SB has done involves a digital clock. About 3 years ago, he asked for a digital clock for Christmas because he liked to play with the buttons on the clock in his room, but we wouldn’t let him. So with his new Christmas clock, he loved to sit just pressing the buttons as fast as he could and changing the time at lightning speed. Since this was really stimmy, we only let him do it briefly as a reward at the end of the day for cleaning up his toys. Over time, his stims have become a little more subtle, and (thankfully!) he doesn’t seem to enjoy the repetitive button-pushing so much anymore. So for a while, he changed the time on his clock almost daily, just having fun with the fact that he could control what time it was in his room. (There is another digital clock in his room with the correct time that he is not allowed to change.) A few months ago, he put his clock on Pacific Time and has left it there ever since. Now he always knows what time it is in California – where Caly lives.
I used to lament that my kids didn’t have a very elaborate imagination. They never play truly imaginative games, pretending to be pirates or super heroes. If you give them a bucket of Legos or other building toys, they seem somewhat lost. Now I know that they have incredible imaginations. They just express them differently than other kids. And “different”? Well, we’re used to that around here.
Sometimes Facebook makes you feel crappy, right?I’m sure you know what I’m talking about.You see pictures and status updates of all the cool stuff your friends are doing, or all the fabulous things that their kids are doing, and everyone you know just seems so perfectly happy and awesome.
Except for you.Maybe you are still wearing your pajamas at 2 pm, and have spent the day either cleaning up the bodily fluids of your children, or sitting in ridiculous traffic that made you unforgivably late, or learning bad news about the health of a loved one.Or maybe all of the above.And you are wondering why the hell your life isn’t anything like the perfect life all of your friends are obviously having and sharing with the world on Facebook.You probably already know the answer, and it’s simple:Your friends’ lives are just as difficult and stressful as yours.It’s just that they only share the good stuff on Facebook, and keep most of the crappy stuff to themselves.
I’ll admit that I was on Facebook a lot this week.That’s mostly because there was a ton of shit going on here!And a lot of it was good.For example, SB participated in a 5-day class for special needs children that teaches them how to ride a bike without training wheels.By Friday he was actually riding a 2-wheeled bike by himself, which was so great!(The program was fabulous – more on that in a future post.)Also, AB turned 7 on Friday, and birthdays are always good news!Even more exciting was that both guys tested for their Gold Belts in Tae Kwon Do, and they both passed.They will be receiving their new belts in a graduation ceremony next week.And even though SB had to make a trip to the doctor on Friday (more on that later as well), it was the most calm and cool he has ever been during a doctor visit, even staying calm and still enough to allow the nurse to actually get a blood pressure reading from him.(I swear to you, that has NEVER happened before!Doctor visits in the past have always been pure, anxiety-filled torture.)
All of this good news I shared on Facebook, and I always appreciated the “likes” and comments from friends.But here’s the thing – this past week was awfully crazy, and full of all kinds of bad crap mixed in with all the good.So here is my confession to you.This is the shit I DIDN’T put on Facebook:
Let’s start with the fact that my husband was sick all week with a nasty flu.Really, really sick.He missed 2 days of work, which is huge for him.He pretty much laid in bed and slept for the better part of 3 days.Even when he tried to get up and do something, like read email or just watch TV, he got nauseous and had to go back to bed.When Charlie is so sick that he can’t even watch TV, you KNOW it is bad!At one point I asked him to put away the groceries for me, and he is normally a pretty helpful guy, but he didn’t even think he could handle that.The daily after school routine was already feeling crunched, with the 75-minute bike class every afternoon.Now with Charlie completely down for the count, all household and parenting responsibilities fell to me, adding to the week’s nuttiness.As soon as he started to feel a little better and was able to get out of bed, it was time for him to host the district-wide Solo and Ensemble contest at his school, leaving him at work for long hours and we hardly saw him at all for 2 days straight.I also pretty quickly realized that there was absolutely no chance of me getting ahead on my final project due for my class on May 1.That would just have to wait until next week.
Although SB wasn’t sick, we still had to make a trip to the doctor.The spring pollen has been unusually bad this year, and it’s hit him pretty hard.He has an old man smoker’s cough that just won’t quit.On Thursday the school nurse called to tell me that he had to be removed from class because his cough was so bad, and that he couldn’t go back to class unless it improved.Now, I have no doubt that the pollen is bothering his system, but the little guy can also be REALLY dramatic about his coughing fits.So I had to miss work on Friday, which I really don’t like to do when there is a rehearsal, to take him to the doctor. Although we got him some meds, it is now 2 days later and I am still listening to his nasty, hacking cough in the next room.I fear we may have to go back again.
Also on my list this week was to prepare the details for AB’s birthday party on Sunday at the Tae Kwon Do studio where the guys take lessons.(I HIGHLY recommend hosting birthday parties for your children in locations other than your home.Not having to clean the house makes it so much less stressful!)Last Sunday, which was one week before the party, my husband and I panicked when we realized that we had only TWO responses from the invitations.All parents probably experience a little bit of this anxiety, but parents of kids with autism worry about this kind of thing excessively: What if no one comes to my kid’s party?What if nobody wants to come?What if all the other kids hate my kid?How will it make my kid feel if nobody comes to his party?I know, I know, it seems ridiculous to worry about such things, but I can’t help it.This is the kind of shit that runs through my head.I admit that I lost some sleep this week over this.I think the more realistic reason that we hadn’t heard back from very many party goers yet is that between spring break and Easter, most people had been out of town or busy with holiday obligations, and my child’s birthday party was not at the forefront of their minds.It turns out that all my worrying was for nothing, because we had a nice turnout for the party and I think the kids had a great time.
I saved the best one for last, my friends.It turns out that despite all my pictures and updates on Facebook, bike riding was not all smiles and rainbows and puppies this week.SB had such a great week at “I Can Bike,” the class to teach special needs children how to ride a bike without training wheels.On Friday, he was riding around the gym with tons of confidence.And most importantly, he was having a fabulous time!The Program Director talked to the parents at the graduation ceremony on Friday, stressing the importance of continuing to practice riding the bike every day, even if just for 15 minutes.This made perfect sense to me.So on Saturday morning, I put SB’s new bike in the van along with SB’s old bike with training wheels, which I was going to give to AB because AB’s old bike was really too small for him now.We drove over to their elementary school and took the bikes to the basketball courts, which are mostly (but not 100%) flat.I started pushing SB just like I had the day before, but he didn’t go.Why?He refused to take his hand off the brake.He refused to pedal.He yelled and screamed at me.“This bike is really bad!It’s too hard!I can’t turn!I can’t do it!I can’t I can’t I can’t I can’t I can’t I can’t……”
I couldn’t believe it!Who was this kid?He was certainly not the same person who was confidently riding his bike around the gym all by himself less than 24 hours before!I was SO frustrated.It had seemed so easy in the class.He had happily participated every single day with no complaining.And now – I couldn’t get him to try ANYTHING.I tried reminding him how good he had been doing the day before.I tried walking with him slowly while holding the bike.I kept countering his “I can’ts” with “You cans!”But he had already decided that it was too hard, and that he absolutely could not do it.My blood started to boil, and I got madder and madder and madder until…
I completely lost my temper.
The boiling blood in my veins exploded into a voice that I didn’t even recognize coming out of my mouth.“WHAT IS WRONG???WHY WON’T YOU EVEN TRY????YOU WERE DOING IT YESTERDAY!!!!!!”And then the lip curled up, and the face turned red, and the sobbing started, and then I had utterly lost him.
Why do I yell at him?It never, ever helps.But I’m human, and sometimes I lose my cool.
At this point, the dad who had brought his daughter to ride her bike on the basketball courts as well packed up his kid and left.They had only been there about 3 minutes.All my fault, I know.I tried to salvage what I could out of the session by insisting that SB finish his 15 minutes.But he basically coasted on the bike without pedaling while I pushed it, me continually telling him to pedal, wasting my breath.After 15 minutes, I told him he had done the designated amount of time, and could stop.
All of this time, AB had been sitting on his bike, doing nothing.Absolutely nothing.Getting this kid to ride a bike even WITH training wheels has been a huge chore.For 2 years, we have been trying to encourage him to ride, but it always takes much enthusiasm and praise.So on Saturday, I turned to him and told him that now it was HIS turn to ride for 15 minutes.Then HE started with the complaining.“I hate this bike!I want my old bike back!This bike doesn’t work!I hate bike riding!It’s too hard!”Already on my last nerve, I decided not to give up, decided not to let him get by with not even trying, and so I looked at him and growled, “PEDAL!”I gave him a small push and walked alongside him while he biked and complained and barely pedaled at all.But I had said we were going to ride for 15 minutes, so dammit, we did!
I don’t know if I did the right thing, pushing them both to stay on their bikes for the designated amount of time, even though we were all miserable.I know from past experience with these guys that it’s usually the right thing to push through things that are hard.I definitely know that losing my temper wasn’t the right thing to do.I know for sure that when we were done, I felt like shit.I felt like crying.I definitely felt like strangling them both.I also felt like breaking open the bottle of chardonnay chilling in my fridge.But I don’t want to go to prison, and it was only 10 am, so I skipped the strangling and the wine and let them play games on their iPods when we got home so that I could collect myself and get through the rest of the day, which included a Tae Kwon Do class and then the Tae Kwon Do belt testing.
I’m pretty sure we all have “Shit We Don’t Put on Facebook.”Some weeks have more shit than others.But life is like that – good with bad, ups with downs.I’m thankful that I did have a lot of good things to share this week.I’m thankful that the upcoming week looks slightly less intimidating.I try to be thankful that these little guys continue to challenge me as a parent in ways I never could have imagined.(But sometimes that’s a hard one.)I have a lot of goals and dreams for these guys – like our family going on bike rides together, and like both boys continuing to be successful in Tae Kwon Do and eventually earning their black belts. Although bumpy, we made a little bit of progress on those goals this week.THAT is worth celebrating.With wine.
I haven’t written a new post for quite a while, and I guess that’s not a bad thing.We are trudging along here at the Burts house, keeping plenty busy, and trying to recover from the winter of 2013-2014 that seemed to be fueled by the Energizer bunny.The snow just kept going and going and going…I desperately hope we are finished with snow and ice and sleet and are finally on the verge of warmer spring temperatures.
Speaking of busy, I have mentioned before that I started a Master of Library Science program in the fall of 2012.With a full time job and two somewhat challenging children, I can only handle one class at a time.It’s going to be the slowest graduate degree in history, but I’ll get there eventually.Anyway, this semester I’m taking “Library Materials for Young Adults,” which I am loving!I’ve had a lot of reading to do, but it’s been FUN reading, so I haven’t minded.It is not at all like the theoretical, tedious academic stuff I had to read for some of my earlier classes.One of my assignments this semester is called a “Publicity Project,” where I am required to create a display, brochure, or some other medium to help advertise and promote a set of books specifically for young adults based on a theme.The syllabus encourages us to be creative.When I decided to use “Books About Autism” as my theme, (go with what you know, right?)I realized that this blog would be a good medium to use for my project.So yes, I am killing two birds with one stone here, posting in my blog AND completing a project for class.I hope you don’t mind!
I must admit that I haven’t read all of these titles, but I’ve read most of them, and the ones I haven’t read are definitely on my list of things to read in the near future.I have also seen both of the movies.All of the titles I’ve selected have positive reviews from professional journals and positive reader reviews as well.I know it’s not a comprehensive list of books about autism.I had a difficult time limiting myself to the 7-10 items required by the syllabus.(There are 12 items here.I just couldn’t get it down to 10!) What follows is my Publicity Project for my class. I hope you enjoy the titles on this list.
Do you know someone with autism?I bet that you do.Maybe someone in your homeroom, someone who rides your bus, or someone in your neighborhood has autism.People with autism can be smart or funny or good at a lot of different things, but they have a very hard time interacting with other people and making friends.You may feel like they don’t want to talk to you because they seem awkward or shy.But here is a little secret – PEOPLE WITH AUTISM WANT TO BE YOUR FRIEND!It’s just really difficult for them to make friends.Do you want to learn more about autism?Here are some books and movies you should check out.They will help you learn a little bit more about what it feels like to have autism, and will show you how important it is for you to try to make friends with someone with autism – or anyone who might be a little bit different from you.
This story is a murder mystery of sorts, told through the eyes of 15-year-old autistic Christopher Boone as he investigates the strange death of a neighborhood dog.The first person style is a very realistic portrayal of autistic traits such as Christopher’s intense stress when his routine is altered, his difficulty in making conversation with others, his giftedness in math, and his inability to understand jokes and humor.
Also told in first person by a character with autism, this is the diary of 18-year-old Taylor Jane Simon.Taylor lives with her mother, who decides to move for the summer to be closer to her boyfriend.Taylor, who does not like loud noises and cannot bring herself to look at people’s faces, is terrified by the thought of moving to a new town and disrupting everything in her established routine.
In another novel narrated by a person with autism, we meet 13-year-old Merilee Monroe, who craves order in her every aspect of her life.Her life gets turned upside-down, however, when she meets Biswick, a new kid in town who has his own difficulties because of fetal alcohol syndrome.The two find themselves on an adventure that causes them to grow into unlikely friends.
Marcelo Sandoval has Asperger’s syndrome.At 17, he has spent most of his life isolated from others by attending a school for children with special needs and working part time at the horse stables at his school.During the summer before his senior year of high school, Marcelo’s father forces him to get a job at his law firm.Marcelo is nervous and distraught about his new job, but slowly learns that he just might have the skills he needs to fit into the “real world.”
This is the story of 12-year-old Jason Blake, who has autism and is desperate to make friends and maybe even find a girlfriend.When he meets Rebecca online, he is excited to chat with her, and then mortified to realize that he will not be able to avoid meeting her in person.Jason must overcome his difficulty with deciphering social situations and hopes that Rebeca will see his sense of humor and his talent for creative writing, and not just his autism.
Twelve-year-old Ted and his older sister Kat are hosting their cousin Salim for a visit in London.When Salim takes a ride on a Ferris wheel and isn’t there when the ride is over, Ted and Kat must solve the mystery of what happened to their cousin.Ted has Asperger’s syndrome, and his differently-wired brain often annoys his older sister, but his unique way of thinking just might crack the mystery.
Carly Fleischmann was diagnosed with severe autism at age 2.Her parents and doctors believed that she would never surpass the cognitive abilities of a toddler.Then at age 10, Carly began to type.It turns out that although her sensory problems are severe and she remains nonverbal, she is a highly intelligent, spunky teenage girl. With the help of an iPad and assistive communication software, she has become a very successful student.Written mostly by her father, this memoir confirms that lack of speech does not necessarily mean lack of intelligence.
Growing up, John Elder Robison always had difficulty connecting with others and was sometimes called a “social deviant.”Despite his quirkiness and his difficulty with eye contact, he has led a fascinating life with adventures that most of us could only imagine.He is also a gifted storyteller, and this autobiography is both funny and sad, yet always uplifting.Finally diagnosed at age 40, Robison finally understands why he is the way he is, and shows that Asperger’s syndrome is not a disease, but simply a way of being.
Naoki is autistic and nonverbal, and speaks through an alphabet grid.Although his method of communication is tedious, Naoki is intelligent and insightful, and provides a profoundly interesting look inside the mind of someone with autism.He answers such questions as “Why don’t you make eye contact?” and “What’s the reason you jump?” with honesty and thoughtfulness.This memoir will inspire understanding, patience, and compassion for those with autism.
Tito was diagnosed with severe autism at age 3 and is mostly nonverbal.His persistent and dedicated mother taught him to read and write in both Bengali and English using a letter board.The result is this book, written by Tito between the ages of 8 and 11, which provides explanations of his seemingly strange behaviors as well as poetry and short stories.This is yet another memoir proving that spoken language and intelligence are not always related.
Temple Grandin is one of the first people with autism to become successful in her field, and to become famous because of it.This made-for-television movie starring Claire Danes was the winner of 7 Emmy Awards, including Outstanding Lead Actress for Danes as well as Outstanding Made for Television Movie.It documents Grandin’s fascinating life from her difficult childhood to her love of animals and her graduate work as a designer of animal handling equipment.Grandin has worked hard over the years to overcome her sensory and social difficulties, and her success story is inspiring.
Starring Hugh Dancy and Rose Byrne, this film tells the story of Adam, a young man with Asperger’s syndrome.Craving order in all aspects of his life, Adam’s world is turned upside-down when his father passes away and he loses his job at the same time.In the middle of this chaos, he meets his new neighbor, Beth.He is interested in developing a romantic relationship with Beth, but his social awkwardness often gets in the way.Throughout the movie, Adam is forced to grow and learn about relationships and also about himself.
The Burts family decided to take a little trip over the Martin Luther King, Jr. holiday weekend to Great Wolf Lodge in Williamsburg, Virginia.The resort, which contains an enormous indoor water park, is a 2 ½-hour drive from where we live, but we had never been before.I had heard great things about it from friends and coworkers, so I wanted to give it a try.We had a really fabulous time, and I thought of 13 things that I learned about me, my family, and about Great Wolf Lodge on this trip that I would like to share with you now.
1. Despite 16 years of touring with the Air Force Band, I am still a horrible packer.For a 2-night trip, we had enough beer for 4 days, enough clothes for 5 days, and enough snacks to last us a week and a half.I have a friend who traveled throughout England for 2 weeks and brought nothing but a backpack.I can’t even imagine how that could be done!I don’t think it’s possible for me to pack without throwing in all sort of extra things “just in case.” My mother also packs this way, so I’m blaming her.
2. If you pack a case of Fat Tire, you should also pack a bottle opener.But if you happen to forget the bottle opener, don’t sweat it.You can pick one up in the gift shop for $6.And then you have a nifty adults-only souvenir to remember your family-friendly trip.
3. I have absolutely no self-control at an all-you-can-eat buffet.The only real restaurant at the resort is an all-you-can-eat buffet, and everything was awfully good.I can’t seem to eat at a buffet without eating until I am in pain.Why do I always do that?It’s not like it’s my last supper!I guess I just feel the need to try everything.I was actually proud of myself that I only ate one dessert this time, but I was still in pain when I left.
4. We found the customer service at Great Wolf Lodge to be great.Everyone we dealt with was friendly and helpful.(Except for maybe the Magiquest employee. See #8.)We only had one issue, and it was a weird one.When we first checked into our room, the guys were beyond excited about sleeping in bunk beds, so they went to explore those first.My husband put his hand on the bottom bunk and went, “Huh.That’s weird.The blanket is wet.Oh, the sheets are wet, too!Man, the whole mattress is soaking wet!”We sniffed it, and were pretty sure it wasn’t pee.So what on Earth caused that to happen?Did someone spill a big bucket of water on the bed?And why did the housekeeping staff make the bed even though it was wet?Who knows!But within 15 minutes we had a brand new mattress and bedding, so at least it was fixed in almost no time at all.
5. The Wolf Den is a pretty cool idea, even though there are no actual wolves in the Wolf Den. There are a number of different types of suites at the resort.We stayed in a “Wolf Den” suite, which is basically like an ordinary hotel room, but instead of a second queen bed, there is a set of bunk beds surrounded by an enclosure that is decorated like a forest.The guys loved it, and fought over who got to sleep on the top bunk first before we even left the house.I made a rule (which was our daycare provider’s brilliant idea) that on our trip down, whoever asked any “Are we there yet?” or “How much longer?” type of questions would have to sleep on the bottom bunk first.They both made it without asking any questions, but SB skirted the rules by making a lot of comments like, “We have 46 more minutes to go!”Since it wasn’t a question, I let it slide.Thankfully, SB graciously let his younger brother go first on the top bunk.But really, Great Wolf Lodge, would it be so hard to put a simple DOOR on the Wolf Den enclosure?That way, when SB wakes up at 5-0-something, I wouldn’t have to listen to him talk to himself and make stimmy noises.You can tell the kid to go back to sleep because nothing is open until 9 am anyway, but it won’t help.He just doesn’t need much sleep!
6. The machine in an arcade that provides you with “Tokens,” “Credits,” or in the case of Great Wolf Lodge, “Paw Points,” should actually just say, “Empty Entire Contents of Your Wallet Here.”Let’s just be realistic about this, shall we?
7. If your 6-year-old has won “The Claw” game twice in his short life, then you should probably take him with you to buy lottery tickets.I really thought that no one ever actually won “The Claw.”AB won a stuffed yellow Angry Bird a year and a half ago, and we thought that was pretty amazing.Then this weekend he won a stuffed Om Nom.If you don’t know the significance of Om Nom, read this post here.AB is pretty darn excited, and is also completely spoiled because he now thinks he will win “The Claw”every time he plays.Maybe he will.
8. The employees who work at the Magiquest store should do a better job of explaining things.Like, what the hell you are supposed to be doing, for example.We had absolutely no idea how the Quest games work, and got no directions at the store.We had a little pocket-sized instruction book with microscopic print that we tried to read in the dark hallways set aside for the game.We ended up spending the first hour annoyed and irritated, and we hadn’t even acquired any runes yet.Also, SB’s magic wand wasn’t working properly, so he was understandably frustrated.Through trial and error, we slowly figured the game out.And, after another trip to the store, we learned that SB’s wand top had become loose, and all we needed to do was screw it back in.(Would have been nice if someone had told us about THAT, don’t you think?)The guys played the game several more times throughout our stay, and they liked it all right, but were not able to gather all 9 runes that are required to be able to fight the dragon and beat the game.The whole thing is quite a money-making ploy for the resort.You have to buy the magic wand, and the instruction book, and then pay to “activate” the wand, and then a special wand topper is optional…see #6 above.
9. Six years of swimming lessons FINALLY paid off!SB was braver on this trip than I’ve ever seen him.As recently as 2 years ago, he was completely unwilling to put his head under water, or even have anything drip or spray on his head.This made what he was willing to do in water parks pretty minimal.But this weekend, he put his head under water, and was also willing to climb up the structure with the huge bucket that dumps on everyone every 15 minutes or so, and also sprays things at you from all sides as you climb up.He went down several water slides by himself, and not just the kiddie ones.We all did one slide together that seats four people in a round raft.It was pretty fast, and at the bottom he declared, “I didn’t like it!It was too tilty!”But amazingly, he didn’t get that upset about it.We praised him for trying something new, and assured him that he did not have to go on it again.AB and I went on that one two more times, and had a ball!(AB is usually not scared of much.)I was so proud of SB for being so brave and willingly trying all sorts of things I didn’t expect him to.
10. Elton John should sue Great Wolf Lodge for Copyright Infringement.There is a nightly show in the lobby of the resort followed by a bedtime story, and the kids are encouraged to attend in their pajamas.I use the word “show” very loosely.I had no idea what the hell was going on, so I’m sure my kids didn’t, either.There was an animatronic Native American girl, an animatronic Frontier Boy, some animatronic talking animals, and there was some sort of message about not being afraid of nature.There were several songs performed throughout the show, and one of them was a complete rip-off of “Circle of Life” from The Lion King movie.The chords and melody were practically the same, even if the lyrics weren’t.Even SB noticed and asked, “Is that “Circle of Life?”No, but I think Elton John would win if he took them to court.
11. Be careful if your autistic child sometimes gets his verbal instructions mixed up.This happens to SB periodically.I will tell him to “put on your shoes,” and when I look at him 10 seconds later, he has not put on his shoes, but he HAS removed his shirt.And he never seems to understand in those moments that he did not complete the task that was requested.I guess verbal instructions sometimes get mixed up at some point during the processing in his brain.So, we were getting ready to leave the water park one day, and my husband handed SB a T-shirt and told him to put it on.Moments later, we were staring at a buck naked SB in the middle of a crowded water park who seemed completely confused as to why both of his parents were shouting at him to put his swimsuit back on.Why does this happen sometimes?I really don’t know.Also, we have told both boys hundreds of times that their penis is private, and that no one should ever see or touch their penis except for Mommy and Daddy and the doctor.Really – HUNDREDS of times.I guess it hasn’t completely sunk in yet.
12. If you take my children into a craft center with cool projects like painting ceramic piggy banks and decorating T-shirts, they will just play Hangman. Seriously, all they wanted to do was turn over the free coloring pages and create Hangman puzzles.And poor SB, who we’ve dubbed “The Autistic Extrovert,” tried his hardest to find a stranger to tackle his Hangman puzzles. But most of the adults he approached were either helping their older child paint something or trying to keep their toddler from eating the crayons.He was pretty disappointed that I was the only one willing to play Hangman with him.At least I didn’t have to buy a piggy bank or T-shirt!(See #6 again.)
13. If you visit Great Wolf Lodge during football playoff season, it’s best that your team lose before your trip.When I first proposed to my husband that we take this trip over the MLK weekend, he warned me that the Carolina Panthers might make the playoffs.Being from Charlotte, NC, he is an avid Panthers fan, and wanted me to know well in advance that if the Panthers were still in the playoffs during that weekend, he would need to excuse himself to watch the game.He said, “I know I shouldn’t abandon my family to watch football during a family vacation, but you need to know that if the Panthers are playing, I’m going to have to.”I thanked him for letting me know, and decided to book the trip anyway.I was thinking in the back of my mind that if he got some alone time for football, maybe I could get a massage in the spa in return.Sadly, the Panthers lost to the 49ers the weekend before our trip.The good news is that I had my husband for the whole weekend.The bad news is that I never got that massage!
It is not lost on me how thankful I need to be that my family was able to enjoy a trip like this.Several years ago, I didn’t think something like this would ever be possible, particularly for SB.The change in schedule, the unfamiliar food, the unpredictability, a water park and an arcade which are both incredibly noisy and over-stimulating, etc.But he has come so far and learned so much about how to navigate this world that his brain is not designed for.I’m so proud of both of them, and am thrilled that we had such a successful weekend.When you are a parent, the most fun thing in the world is watching your children have fun.And when your child grabs your hand on vacation and says, “Mommy, I wish we could stay here forever,” then that is just pure bliss.
Today is an anniversary, but not the kind of anniversary one usually celebrates.Today, November 8, is the 7th anniversary of SB’s diagnosis of autism.SB has come SO far since then.He has made significantly more progress than the Developmental Pediatrician predicted he would on that gloomy day in 2006. Also significant is how far I have come as a parent.Seven years ago I was a depressed, emotional, miserable, incessant worrier who thought that nothing in my life would ever be happy again.Kind of selfish, really, since this diagnosis didn’t actually happen to me!Since then, I have become a confident and knowledgeable advocate for my children and sometimes even a giver of advice and comfort to other parents. I have made huge changes in my attitude, and in fact, my entire worldview.But it didn’t happen overnight.
I kept a journal during the period after SB’s diagnosis.I was pregnant and had gestational diabetes, and therefore I couldn’t turn to alcohol OR sugar to feed my depression, so I turned to writing.(And LOTS of bubble baths!)The journal is an ordinary-looking notebook full of deep darkness and despair.Reading through it last night, 7 years later, was sobering and confusing.I remember that time.I remember that sad, dazed, miserable woman who wrote those words.I remember how frustrating our life was then.But I don’t feel like I am the same person who scribbled all of that stuff down on paper.SB is certainly not the same person being described in the journal.Everything is so much different now.And better.Absolutely BETTER.I thought I would share with you a few quotes from the journal and explain how they reminded me how much progress SB and I have both made since then.
1 – Proof that I definitely needed Ambien:11/19/06 – “Every single time I wake up in the night (which is a lot of times) it hits me again like a ton of bricks – Oh, God!We have an autistic child.It wasn’t a dream – this is really happening.And Oh, God!We’re also having another baby.Then I can’t get back to sleep.”
2 – Reminder that the beginning of an autism diagnosis is very time-consuming, but that it isn’t always like this:11/20/06 – “I am also very busy with paperwork about him – Tricare, preschool, etc.Lots of forms to fill out and copies to give to this or that person.And taking him to the doctors takes a lot of time, too.”
3 – Proof that I definitely needed Prozac:11/23/06 – “And getting through the day is hard.Taking my next breath is hard.Getting up off the couch is hard.Being with SB is hard, especially when I am alone with him, because I am reminded constantly about all the things he cannot do that he should be doing at his age.But somehow I keep taking breaths.Somehow, I keep getting out of bed and getting up off the couch.I really don’t know how, but I do.”
4 – Reminder how distant and solitary SB was at this age, and how much he’s changed since then.Now I actually refer to him as my Autistic Extrovert:12/3/06 – “Is it always going to be like this?Is he always going to be frustrating?Is he ever going to want me in his life?As it is now, when you put him in his bed, he wants to be alone.If you try to read him a story, he cries.If you try to sing him to sleep, he pushes on you to make you leave the room.He doesn’t want his mother.He would rather be alone, and that makes me terribly sad.”
5 – More Prozac proof, I think, because the joy DID come back:12/15/06 – “I feel like I’ve been cheated out of experiencing what parenting is supposed to be like.Children are supposed to be fun at SB’s age (21 months).They are supposed to be learning and experiencing life and sharing what they learn with their parents.They are supposed to give their parents joy.All I get from SB is anxiety, worry, and frustration.When will I get joy from him again?”
6 – Reminder that Christmas, and all holidays, have improved SO much:12/23/06 – “…for a lot of the day he seemed very distant and disengaged.It is so hard to get him interested in anything – he just wants to wander from room to room and stare at the lights.It’s a little creepy and very sad.I am just so sad.Opening Christmas present was again very sad.SB just has no interest in any toys whatsoever.Charlie wanted to play SB’s favorite CD to keep him in the room with us, which worked, but I couldn’t interest him in opening anything.He just stared at the CD player the whole time we opened gifts.Will we ever be able to bring him out of this dazed state?”
7 – Reminder that toys and books have gotten so much better, and that he really is interested in other children now.(See above: Autistic Extrovert!):12/24/06 – “We tried to interest him in toys, but we couldn’t seem to interest him in anything at all.No toy or book, new or old, would grab his attention.I just can’t express in words how sad it makes me feel that my child doesn’t know how to play.He doesn’t understand what to do with toys or with other children.”
8 – Reminder that SB’s attention span is so much better now:12/30/06 – “SB sat at the art table for 10 whole minutes!He doesn’t do anything for that long! Normally no single task or activity lasts more than 1-2 minutes.And he was not strapped in – just sitting on the bench.He scribbled on plain paper with crayons.”
9 – Reminder that SB’s diet is better now:I can’t give you just one quote about this.Every single page of the journal discusses what SB did or did not eat that day.Why was I so obsessed about that?He was a terribly picky eater as a toddler, and it seemed to distress me at every meal.SB’s diet has expanded drastically in the last 7 years.Just last night I made a burrito bake casserole for dinner, and SB cleaned his plate with minimal complaining.(What are we having for dinner?Burrito bake casserole.Is that what *I’M* having?Yes.Do I *HAVE* to eat that?Yes.Sigh.)But there was no more arguing after that!
Of course there is other stuff in the journal that is NEVER going to see the internet.Dark, embarrassing, scary stuff.But that’s what a journal is for, I guess: to let out all the crazy, scary thoughts so that they don’t drive you mad.And no one ever has to see them if you don’t want them to.
So now I need to explain the meaning behind the “It Gets Better” title.About a year ago, I bought the latest album by the band Fun. and put it on my iPod to listen to when I work out.(I find the punctuation in their band name annoying, but am trying to honor the name they have chosen and use the period!)When I heard the song “It Gets Better,” I immediately applied it to my own life and thought about what a great theme song it would make for autism parents.Then I did a little research and learned that the song is actually an anthem for the support of gay rights, and the message is for homosexual teens and young adults: Coming out is hard, but it gets better.When I realized that it was someone else’s theme song, I let it go and stopped thinking about it.
Then last month, I heard the song again on my iPod during a run, and thought, “Why not?”Why can’t it be an anthem for more than one cause?Of course the gay rights movement is important, and it is certainly necessary to support young adults learning to embrace their homosexuality, but why can’t we autism parents use the song, too?
So today I celebrate this anniversary.I celebrate that this road is hard, but it gets easier the longer you travel it.I celebrate the changes in myself – that I am a more compassionate person, and a BETTER person, because of the experiences I’ve had these last 7 years.I celebrate the fabulous people that have come into our lives that we never would have met if we had never been put on this autism path.I celebrate both of my sons, their unique, quirky, brilliant little minds, and ALL of their successes, no matter how big or small.