Learning How To Breathe

Today the morning routine started out great. J woke up calm, ready to run, ready to eat breakfast, ready to work (middle school starts later in the morning this year, so we’re able to fit in a fair bit of studying and extra practice in the mornings). W had eaten breakfast and was dressed practicing the piano. It was all going great until 8:30, when W couldn’t find her play script and two minutes later realized that it was an orchestra day and she needed to be at school early. After a mad scramble to find her script, we packed up everything and were out the door in minutes when J announced that he needed a bag lunch “because the cafeteria is serving French Fries today” (J has a pathological fear of French Fries so just sucking it up and doing the hot lunch is not an option) so in my brain I shuffled my schedule to figure out when I could make a lunch and have it dropped off for J later that morning.

We pile into the car with the dog and back out of the garage (don’t ask me how the dog ended up in the car) and by this point I wanted to explode. In my brain I was screaming, “Are you KIDDING me!” “How did we just go from everything-under-control to the Apocalypse!” I was about to let it all out when instead I threw the car into park—mid driveway—and announced: “We’re all going to take a deep breath.”

I’m trying to be better at modeling for my children how to handle stress. J is especially terrible at handling it—the kid has so much bottled-up, stewing, brewing anxiety it makes me exhausted just watching him go through cycles of anxiety-ridden self narrative all day long.

After a few deep breaths, I said nothing. I was still angry, but the lecture wasn’t worth it. The kids needed to be emotionally and mentally ready for the day, not running into the school carrying the wrath of mom inside with them.

I’m really trying to be more mindful. There has been a lot of research and media buzz about mindfulness the past few years and the emotional and brain benefits that come with it. Especially with kids who struggle with anxiety, ADHD, autism, and mood disorders. If you want to read more about it, here and here are a couple of articles.

Breathing is just a part of mindful living–there’s more to it than that, but the breath is something we can always come back to to recenter ourselves. It’s strange to think that such a simple thing like breathing can be so mind and mood changing. As soon as we’re born, we’re breathing. It’s automatic. But there is this crazy amazing power that comes from taking a deep breath. Not just any breath, a deep mindful breath where you focus on your body and where your breath is happening. It’s this little time bubble that lets you assess what is going on—is the world really going to end because I’m going to have to bring a bag lunch later in the morning? That W lost her script again? And you realize that even though there was a blood moon last night, the Apocalypse didn’t happen and it won’t happen right now because of these little morning glitches. That showing your kids that the world isn’t going to end will also show them that these things really aren’t a big deal and we can reset and move on.

See? Magic!

I’m not going to pretend I’m an expert on this or mindfulness. But I’m trying. I took an eight week course last fall and it’s really changed my perspective on how to handle the way I approach things. It’s challenging. I go through spots of dedicated mindfulness and there are months at a time where I forget about it. But since school’s started I’ve been thinking how it so important for J to start adopting some of these skills.

We had some breathing successes and fails this past week. On Tuesday we attempted to have an EEG done on J to rule out some things (seizures, tics, etc. Fun fact, did you know that 1 in 3 kids with autism have seizures? Find out more here). I think Steve and I both knew coming into this that this wouldn’t work out—but we tried it anyway. J walked into the evaluation room asking about needles over and over again. When we finally convinced him that there were no needles involved we were able to have him sit for 20 minutes to get his head marked up with red marker and wax electrodes plastered all over his head. However, when he was told to lie on the bed to relax, he had a monstrous anxiety attack and there was no way we could get an accurate reading. We tried everything for 20 minutes, Imagine Dragons on the phone, breathing exercises. Nothing. We picked up W after the failed appointment (she knew J had a dr’s appointment) and when she saw him sobbing in the car with blood-red marks all over his head, she started bawling too, “What did they do to him!”

This is before the electrodes were added. There’s red marks all over his hair too. He started getting panicky when the tech was marking his head and he wanted to see what was going on. Since there was no mirror, I took a picture. Frankenstein-ish, eh? 🙂

Needless to say none of us remembered to breathe through that whole ordeal.

But last night we had something amazing happened. Before bed we try to practice some mindfulness moments with J and recently I’ve been trying to work on breathing exercises. With the lights off, lying flat on his bed I placed a stick of deodorant on his belly (to help him understand where his breathing happens) and told him to make sure it went up and down with every breath, listening to the lady on the app guide him through mindful breathing. And there J stayed, still—perfectly still—watching and feeling the deodorant stick go up and down and the kid who usually fidgets constantly, runs 3 miles a day, and still can’t hold still long enough for everyone to sit down for dinner, watched his breathing for five minutes. FIVE WHOLE MINUTES of still and calm. You could “see” his brain figuring out how his body was working! He’s really starting get how this works!

With the adventures over the past few months—seeing J get stressed out over dentist and doctor’s visits, seeing him burst in explosions of anxiety or frustration or even silliness—I’ve realized more and more how important it is for him to remember to breathe. To control his breath. Two weeks ago we found a wonderful pediatric dentist to work with J. He told us that J doesn’t need to go under for any procedures right now, but if he did in the future and if we wanted to do the nitrous oxide route, he’d have to learn how to breathe—deeply—though his nose if it was going to work. The tech at the EEG said the same thing. We could try the EEG again another time with nitrous oxide, but he would have to be calm enough to be able to breathe through his nose.

We aren’t there yet. Not even close. I’m not good at coming back to my own breath when I’m upset either. But we’re practicing it every day now. I’m realizing how important it is to keep breathing: in the literal, spiritual, mental, emotional, and symbolic sense. I’m realizing how important it is for J to be aware of his body and how he can be in charge of it.

It’s going to take a while. First you learn how to breathe by really paying attention, being aware of your body, and come back to it even when you notices distractions, then you have to remember to do it when things get tough. I think he can do it, because J always surprises us. He’s already shown so much growth this summer. The best mental physical resilliance I’ve seen yet was when he climbed to the top of Whistler Mountain in Jasper. I didn’t expect him to do it.I figured that he had climbed high enough. But when he saw W at the top he decided he was going to do it—crawling, crying, regrouping again. It was hard. Physically hard. It was windy, steep, and the air was really thin–a real mental and physical struggle. But he did it.

Like I said. He always surprises. That’s why we keep trying.

If you want to try out some mindful breathing (especially with kids) here’s some great little resources:

First saw this on Amy Poehler’s Smart Girls. Love it!

The Settle Your Glitter App. Totally free!!! It’s on my phone, so we can use it anytime, anywhere. Because you know–stress happens anytime, anywhere 😉

Accepting J’s Creative Offerings

Trying the Lego thing again (mid-August). A lot of brain-finger coordination to figure out.

I know J’s brain is different. I know sounds bother him. There’s something about Adele’s voice (especially “Someone Like You”)—the pitch and frequency–that puts him in a sensory overload meltdown. Some textures still bother him. Even at 12 he won’t eat eggs or Jello. He still wipes his hands on his shirt because he panics when there is anything wet, sticky, or slimy on them and can’t wait the three minutes it takes to wash and clean them properly. There are a lot of things I’ve just written off with J because the coordination, talent, or patience. His brain and body don’t communicate well sometimes. He’ll never play hockey, football or baseball. He just doesn’t have the coordination for those things—he can’t “read” people’s movements and anticipate what’s going to happen next. And that’s okay. Because you can still live a good life without listening to Adele, eating Jello, or being a sports star.

I have to be careful with this thinking though. Sometimes my expectations and experiences with J inadvertently get in the way of J’s development. We bypass over some of those “less important” developmental milestones—especially the ones that espouse creativity—because we’re just trying to keep up in the social and academic areas. I convince myself that there are bigger fish to fry—more important life skills to work on, and since everything for J is work, hard work, I let some things go. They’re not expected of him at school. He doesn’t need them to interact with other people. Things like coloring and art projects. Things like building with Legos—activities filled with sensory, visual spatial, and fine motor skill minefields.

Because most days we don’t need to add to the minefields.

But lately I feel like we need to get back to some of the “hard” things that aren’t so academic. Maybe it’s because of cross-country and the stamina I see that he’s been building: emotional, mental, and physical. Yesterday morning Steve and J were in J’s room working on Legos. (I say “working” because we haven’t graduated to the “play” mentality yet. When we first introduced Legos again to J about a month ago, it was painfully frustrating to watch. The way his hands shake like he has Parkinson’s trying to push two bricks together. The way he looks like he’s still mastering the pincer grasp trying to pick up a round circle piece 5 millimeters in diameter, or how he looks at the instructions three times before he can decide exactly where to place the brick on top of the previous one. Lego hits J in all of the motor skill and mental processing weak spots and watching him those first few days made me remember why we gave up on this years ago.) Even though he struggles with it, he’s been sticking to it. J wanted to build something from Egypt (he’s obsessed with countries of the world) and he came up with the Pyramids. I left the room to go put away laundry and came back to find J and Steve’s masterpiece. I was stunned what they came up with. It was definitely a pyramid, but they didn’t use any of the pieces I would have used in building a Lego Pyramid. I would have used a combination of square blocks and slanted blocks. J and Steve had used square blocks and a round piece on top.

Because bison.

J working on his own creation.

It was that moment when I realized that sometimes my own judgments of success, creativity, experiences and “what’s good enough” prevent me from encouraging J in these creative areas and I started to wonder how many times I’ve done that with both J and W. How maybe I don’t always have the “right” way of doing things. That maybe there’s other ways of doing things too.

J’s recreation of a bedroom. There’s a flower, a night stand, and bed. If you look at it in the right way 🙂

It made me realize that in many ways I have been selling J short. I’ve always assumed that J doesn’t have a creative bone in his body. He has other strengths—rote memorization for every country’s capital city on the planet or every trivial fact of every president of the United States—things I write off as an “autistic” skill. Or something that would wow a crowd at a party but nothing more. But maybe he IS creative, but in ways I don’t usually consider to be creative. Because to me, being creative looks like the typical fine arts—it looks like the things I did as a kid. Intricate skits and plots with Legos. Writing skits, acting, and editing movies with my sister and cousins. That phase in Junior High where I thought I could compose jazz. To me, that’s what creativity in a child looks like.

But maybe J’s has a different flavor of creativity. Maybe J’s creativity looks like Scrabble and his incredible talent of rearranging 7 random letters, not just into one word, but half a dozen words that can be placed in multiple places on the board—all within seconds. In those moments he is creating order out of chaos. Maybe there’s other things that he does every day and I’m missing them.

It is a hard thing looking outside of the box. Looking outside of my box. That’s the crazy, humbling thing about being a parent, is that once you’re a parent you feel like you know your child, their strengths, their limitations, the way they see the world. And then you realize you don’t know anything about them at all, and you just need to stop and watch and meet them in the world they’re in. Because they can see and learn things in a way you’ve never thought before.

We’ve also practiced coloring skills this summer. This picture looks like a 7 year old could do this in their sleep, but for us we’re ecstatic. Actual effort put into keeping in the lines and filling the white space. Practicing those fine motor skills!

I think it’s interesting how J splits color in a space. Like the blue black tongue. He does this quite a bit in other coloring pages.

Just because J’s feeble attempts at creating something—especially when he’s trying to regulate so many things in his brain–doesn’t mean he can’t create or won’t ever be creative in something. I need to be better at accepting his creative offerings. Just because it’s hard or unnatural doesn’t me he shouldn’t try. He will never be a Picasso or Frank Lloyd Wright but in these attempts I get to see how his mind works. And that in itself is worth every coloring page and cluster of plastic blocks I get from him.

Ape Brains and the Middle School Boy

J at the Topeka Zoo in 2008. Meeting the apes.

Because we walk after school from the middle school to the high school every day, I’m getting a refresher of what the real middle school population looks like. Not the one that you see in the halls, following school rules, responsibly exchanging books from their lockers to be prepared for the next class. The population who is headed home from a long day of school, letting out that bottled energy, true colors showing. The pushing, shoving, jeering, girl flirting kind of middle school population.

More specifically, the ape-brain middle school boy population.

Like the kid who pushes 30 miles an hour on his moped, circling the block a few times to impress the girls walking home. The boy chasing after the moped, flip-flops smacking against the road while his friends walking behind on the sidewalk wail and cheer after him, also trying to impress the girls walking home.

J watched this whole scenario go down the other day and said to me, very loudly and proudly because he’s great at judging other people’s bad behaviors, “That’s really dangerous. They’re engaging in risk behaviors.”

Risk behaviors: Actions of choices that may cause injury or harm to you or others. One of many terms in Chapter 1 grade 7 Teen Health we’ve been practicing since school started. Along with consequences, cumulative risk, prevention, self-evaluation. Every kid in grade 7 health has been learning these terms since school started. Because apparently for the human brain to progress, it has to digress.

And for some reason boys seem to most visibly manifest the digression to the ape brain.

My sister reminds me of this all the time. She should know. She taught junior high art for a few years. She’s told me stories of boys–neurotypical boys doing really stupid things. A “normal” boy slithering on his stomach into her art classroom, claiming he was a snake. The boy who thought it would be really funny to set off a stink bomb but failed to think that setting it off right next to him would 1) ensure he was the victim of the most potent part of the bomb and 2) would pretty much let everyone know that he was the perpetrator. The boy who showed up in a fur coat every single day of the year. My sister’s stories trigger memories I have of middle school behavior. Like when I was in junior high and heard that a boy in another homeroom took a pair of scissors to a girl’s ponytail sitting in front of him.

During J’s ultrasound and the “reveal” of the little turtle between his legs all I could think of was what boys looked like in middle school. I knew nothing about boys. I grew up with one sister. I had no idea what to do with boys. Especially when they turned into boys like that.

I’m pretty sure J had an ape brain day today, full of defiance, work-avoidance, attention seeking, pushing the limits. At least, that’s what my gut told me today when I picked him up after school, “This is it. This is definitely a middle school boy pushing the limits exhibiting full risk behaviors.” But with J it’s tough. I can’t always be 100% sure. Not all “behavior” days look the same. Last week’s spectacle looked different. Last week, my gut said, “This isn’t middle school boy. This is something else.” It didn’t feel like middle school boy. I can’t even say for sure if it even looked like autism boy, because sometimes I suspect there are other things going on we don’t even know about.

So while there are rules and protocol to follow for the typical testing-the-limits middle school boy, there are no rules and protocol for dealing with the autistic testing-the-limits middle school boy. Because here’s the fun thing about autism: autism looks different in every kid. And to make matters worse, it very, rarely stands alone. It’s got friends like anxiety, obsessive compulsive disorder, ADHD, oppositional defiant disorder, and more that look a lot alike and like to hang out with each other. It’s what leaves us parents, teachers, and caregivers banging our heads against the wall. Trying to figure out what to do.

Steve and I escorted J home after school angry and demoralized. J knew the drill. Late dinner minutes. Privileges taken away. But when he got through the door, he started to panic. “I need to go exercise.” We had already said no to cross-country. That’s a privilege. He has to behave to go. But he got more panicky and insisted. “I need to go exercise now. I need to get all this bad energy out.”

So we rushed to get changed and were able to get out of the door by 4. Steve drove us and we were lucky enough to hop out of the car and catch the boys at the intersection by the high school. Today was a hard practice. We ran drills. We ran far. J started crying quietly to himself near the end. He kept muttering, “This is hard but I can do it.”

I’m still not sure if letting J do cross-country today was the right thing. It is a privilege. He has to behave to go. But at the same time it seemed like he needed it. He seemed to know himself well enough to need it.

I’m not sure what we can do for now because I feel like we’re sort of spinning in circles. We need to find out if it’s the middle school boy kicking in, amped up anxiety that’s looking a whole lot different than it did a few months ago, autism that’s looking different now that he’s getting older, something new altogether, or some or all of the above. Unfortunately all of this takes trial and error and time. For the doctors to figure things out. For the teachers to figure things out. For Steve and I to figure things out.

Tomorrow’s a new day. We’ll see what happens.

Today’s Victory

Running at the beginning of summer

J has been “shadowing” the high school cross-country team and tonight marks J’s fourth cross-country practice. I can’t shout louder from the rooftops how proud I am of how hard he’s been working. It’s been a hard week. A lot of learning curves. But he keeps going back, and the high school kids are so great with him. The coaches are so willing to work with us. And he ran the best he’s ever had so far today. Today, he actually said, “no breaks now mom, I want to make it to the next (traffic light, stop sign, road sign, etc) without stopping.”

Who’d have ever thought that J would love to run?

We started this summer, every morning running. It wasn’t love at first sight for J. In fact, he hated it. We started with a quarter mile and he’d run and cry, and yell, and cry until it was done. I thought it wouldn’t last more than a few days. But then J surprised me. He started waking up in the morning, begging to go for a run. And then we were able to get to a half mile, then mile. By the end of the summer J was doing 2 miles a day with a few short breaks.

Just before the school year began, I suggested to J’s special ed team that we sign J up for cross-country. I’d told them about J’s running experiences this summer. I even said I’d run with him, so I could be there if there were any problems or meltdowns. They loved the idea.

Initially,the middle school and I thought we could place J with the 6th grade team (the year younger than him), but as his special education team looked into it further, we realized that because of North Dakota public school athletic rules, J would have to “compete” with those in the same grade. In our circumstance, the seventh graders run with the high schoolers. Still determined to make something work for us, J’s middle school then made arrangements and talked to the high school to see if they could accommodate J.

I set up a time to talk with the boys coach after the first day of school (without J). When I arrived at the high school, however, I had this confidence-shattering, panic inducing flashback to when I first moved to the United States. I was starting grade 11 (or Junior year of high school) coming from a big Canadian city to some small nowhere town in the Midwest, USA. I’ll never forget that feeling when I first walked into the high school–the one of pure terror. I knew no one, I had no clue where I was going. My mom had to come with me to register me. My marks/grades had to be transferred to the school and then “re-translated” because the grading system was different. I got a tour of the school and even after that I couldn’t remember where anything was. I just wanted to go home and crawl in a hole.

Here I was again, almost 20 years later, walking into a high school I’ve never known, explaining our “special circumstance” with coaches I’ve never met. We were starting a few weeks into the season and so we were already out of place and behind.  When I got back to the car, I didn’t want to crawl in a hole, but I wasn’t so sure if I wanted to sign J up for cross-country anymore. These kids were big high school boys. There are only 4 other seventh graders on the team–one of those being Joshua. Could he really handle this? He has meltdowns all the time at school. It would be embarrassing if they happened here. These kids wouldn’t understand. They haven’t read the autism literature we pass out to his classmates. This could go bad quickly. I had one of those “Am I ruining my child?” parenting moments.

But deep down I knew we had to try it.

When J and I showed up dressed and ready for the first day, I felt intimidated all over again. The girls team trickled out of the locker room young and fit, and I had to suddenly squish down any sort of body image complexes and insecurities I have about getting older. Then the boys team came out and I thought, “what are they going to think? a seventh grade kid who has to have his mom run with him?”

We then followed the boys team down the hall to a classroom to talk about goals. I held my breath for the entire 20 minutes. J had to wait to run–he HATES waiting. We had to go to a classroom he’d never been in before and he kept whispering to me, desperately wanting to know what room number we were headed to. (Luckily it ended up being a “safe” one). Amazingly enough, the team meeting was held in a room that looked like an American History room–posters of the Presidents of the United States plastered all around us. J’s definition of heaven. He’s absolutely obsessed with Presidents of the United States and all the trivia that come along with them. He managed to make it through the 20 minutes. Then one of the coaches awarded two sets of cookies to the kids who improved the most that week. J had his eye on a bag, and said quietly, “I ran hard too this week.” The coach asked J to repeat what he had said, and J said, “I ran hard too this week.” The coach answered sincerely, “Good for you,” and then, when he read J’s disappointment in his face, softened it a little by suggesting that “maybe one of the kids would share after practice.” And I thought, “This is perfect for J. He’s going to have to play with and follow the big kid expectations. He’s going to learn we don’t get cookies for ‘just showing up.'”

We headed outside for our first run with the boys and by now my confidence was up again. We had practiced running all summer. J could do this. I know he could. J was so excited as we started. “Hey mom, I’m running with the group!” he said with a huge grin on his face. And that lasted for about 3 minutes until we both realized that teenage boys are fast. REALLY FAST. Like 5, 6 minute miles fast. J struggled to keep up. I couldn’t keep up if I ran my fastest. We were running in the afternoon–90 degree weather. He fatigued fast. We came in dead last and that was just the warm up run. After consulting with the coach, we both decided that it was probably enough for J. We headed home. I thought for sure that was first and last practice.

But the next day J wanted to go back, and we did it again. In 90 degree heat, and it was miserable. At one point he started walking and I said to him, “I’m going to have to leave you behind,” and he responded angrily and in a perfectly scripted, Toy Story response, “No one gets left behind!” I couldn’t help but crack up. Even when he told me that he hated running and hated me. We stayed a little longer at practice. We came back the next day. And the next. The boys started warming up to him, introducing themselves to him. They cheered him on when he came staggering in after a run. The boys let him lead the Spartan cheer after practice. Everyone has been so amazing and supportive.

Today he did a whole mile and a half without breaks. He even ran ahead of me. But what I’m most excited about is that he’s building mental endurance. He’s learning what it’s like to be part of a team. He’s motivated to keep up with the big kids.

I’m not sure how the rest of this season will work out. But that’s okay. I don’t have to have this all figured out. We’ll just take it day by day, and see how it goes.

My $64,000 Question

Enjoying the last days of summer

It’s the third day back into school and I’m exhausted. Some of it has to do with my wrestle with the Neti pot and the lack of sleep I got last night due to allergies, but most of it has to do with the emotional up and downs of starting a brand new school year with a middle schooler with autism.

You think I’d learn this by now, being a somewhat seasoned adult (right?), but I’m constantly forgetting transitions happen all the time. I think most of us think of the big transitions: weddings, baby births, high school graduation, empty nesting, retirement, etc, but I know I’m forgetting the ones that seem to happen every few months. This summer we adjusted our routine a lot. J woke up, went for a run, practiced piano, we worked on reading skills, math skills, any other school prep we could think of, played, had dinner, played outside again as a family, and then after the kids went to bed I worked on my part-time job until I went to bed. Of course, we went on a few trips so we had to figure out our routine again on the fly, and then we were back to our home routine again. And then school happened.

I’m not going to lie, I was ready for this transition–sort of. I was ready for for W to not be around teasing and complaining about J–which was getting worse every day we got closer to school. I was ready to be able to do my part-time job (which I LOVE–it’s the best job ever–I can keep my brain from going to mush and still spend time with my kids) during the day again. Working with J practically one-on-one all day and then my “downtime” filled with more work was making me pretty batty by the end. Just ask Steve. There may have been one or two emotional meltdowns.

But I wasn’t ready for J to go back to school. Last year–his first year at middle school was hard. The hardest year we’ve ever had in public school. Between a jump in homework and academic expectations and behavioral problems and adjustments we came out of that year a little battle-scarred. I wasn’t ready to sign up for that again.

Because for some reason, J becomes a completely different kid when he leaves our house. Especially when he goes to school.

Middle school registration

Last week, we went to back to school night. W and the grade six class had their orientation 20 minutes before J’s grade seven class, so Steve took W while I drove around with J to kill time until J’s orientation and out of nowhere we started having this conversation. A really great conversation. J started off by talking about the new school year, specifically what year he’ll graduate middle school in and then high school. He asked me what happens after high school and I dodged the question because with him I really don’t know yet what that looks like.

“Hey mom, look that’s a crazy orange car!” He says pointing out the window. He’s forgotten his post high school question and has moved on. “Why do people choose that color of car–that orange color.”

“I don’t know, J,” I say, because I don’t. It’s a pretty ugly color if you ask me. “Our family always buys used cars and we really don’t get to pick the color, but some people buy new cars and they get to choose the color. What color would you pick?” I ask, not really expecting an answer, because I think his brain’s moved onto something else.

“Black,” he says, not even skipping a beat. Which really surprises me, because that means he’s thought about this before–and I see a little glimpse of his personality. So I prod more.

“What car would you buy?”

“A Chevy trailblazer.”

“Wow,” I say, impressed again. “Do you know what kind of car I’d like to get?”

“No, what?”

“A Prius. Like our friends have. I want to help out the earth and use less gas,” I wonder if I could even venture into an explanation of global warming with him, but by now it’s time to head back to find a parking spot and mentally prep him for orientation.

He survives orientation well enough. It’s in the gym, and he has a thing with gyms. A fire alarm went off while he was in the gym back when he was in second grade and he will probably remember that for the rest of his life. In fact, he can tell you the date AND day of the week if you asked him. During orientation, a parent was standing right beside the fire alarm pull station and that was sort of freaking him out because J was afraid the parent might accidentally set it off, so his para was gracious and talked to the parent about maybe standing somewhere else. We did leave 5 minutes early because at that point his anxiety was in full force.

After orientation we went down to his locker to load up the last of the school supplies and he was SO excited to see his friends he hadn’t seen all summer. And that’s when the J we know at home totally disappears.

“Can you eat Chevys!? Can you eat Chevys!?” He starts running around asking every kid he sees.

“Can you eat Chevys!?” Is the key phrase J uses to interact with friends. For some reason he thinks it’s funny. 1) Because it’s a ridiculous question, and 2) No one knows what to say to that and so guaranteed you’ll get a great facial reaction.

The kids know J. J does this all the time with them. And, bless their hearts, he goes to school with some of the kindest, most patient kids out there. But it also breaks my heart a little. Because the kid I had an awesome conversation with 30 minutes earlier–one that I had an on-topic, appropriate conversation his friends never see. They don’t get to see the kid we see at home. The one that’s quirky and full blown autistic and says out-there things but is also capable of really great, on-topic, meaningful conversations too.

That’s my $64,000 question. That’s a big piece of the puzzle I’m constantly trying to figure out. How do we get J to be the same J at school as he is at home? The J who can argue, manipulate, talk, and have fun with–in good, socially appropriate ways with his sister. How do we get him to do that with the kids at school? How do we get the kid who gets frustrated but ends up pulling through with a task at home to work that hard at school? How do we get him to obey school rules like he does with home rules? I know we’ll be revisiting J’s IEP in the next few months, but for me, that’s a huge mom goal.

Because he can have all the quirks, talents, and abilities in the world at home, but if he can’t translate those skills to the outside world, then it doesn’t matter in the end. I’ve thought about this a lot. I’ve seen it year after year in the first year college English classes I’ve taught. You’ll get smart kids–kids that got As in high school who end up failing or dropping out of class half way through semester because they can’t do this either. They haven’t been able to translate those skills in a new environment, without the net of parents and teachers keeping them in line. It’s just as much a problem for typical developing kids as well as kids with special needs.

First Day!

So far we’re surviving. The first two days were great. Today not so much. I think he’s testing the waters. We’ll figure it out as we go along. J will test and learn and comply and we’ll have to be on our toes in every response. But overall I’m optimistic for a better year. The teachers know him better. I’ve seen a change in his maturity this summer. And the best thing about this kid–when all is said and done, he really, truly, honestly, doesn’t want to let Steve or me down. He really cares what we think and he doesn’t want to disappoint us. He’s always been like that. Despite the autism. And that’s something we can work with.