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!”

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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. July 2015 part 2 127

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 😉

What’s on our iPad: Reading Comprehension Edition

I used to think that we are all inherently good or bad at things. But after hearing Temple Grandin speak in Fargo a few years ago explain her strengths and weaknesses in math (how she was terrible at algebra and fantastic at geometry), it made me see “subjects” and “challenges” in a whole new way, and it helped me understand J a little bit better.

J is an amazing speller–he always has been. Before he could really talk, he could spell words, not just easy words like “cat” and “dog.” He could spell “dinosaur” and “Hy-Vee-Food & Drug” and “Old Navy” and “octagon.” When he was three. He loves grammar and usage–so much that he will take a pen and scribble out the misspelled words and bad grammar on Mac and Cheese boxes or other “poor English/cutesy English” marketed items. He loves the thesaurus and homophones and antonyms and palindromes. He will kick your trash at Scrabble.

But he is absolutely terrible at reading comprehension. Since he doesn’t cooperate with state testing, and since we’ve never gotten an “accurate” reading on his strengths and weaknesses (mostly because he doesn’t want to do the test and he’ll guess random letters like A, D, D, C just to get the test done), I’ve been trying to pinpoint a little better where his strengths and weakness are. I found a few websites for practice Common Core test prep and we’ve done a practice test almost every day this past month. I started at grade 2 just to gauge where J is using this test website: prepdog.org.

The questions are shorter, and it allows him to develop better test taking skills. The tests aren’t good but not perfect. There are some spelling mistakes (which J is quick to point out). Sometimes there are really badly worded questions, but by going through this, I realized that standardized testing might not be as evil as I once thought. It’s allowed me to notice trends in J’s strengths. Believe it or not, he focuses on feelings in the story (at grade 2 this is pretty easy to find in the text). I’m guessing because he’s had so much therapy on that. He does really well at short paragraphs with once central idea–something I wasn’t sure he was able to do. He DOES NOT know the difference between fact and opinion. He CANNOT make very good inferences. He has a hard time with sequences and steps (what did Jimmy do before he picked up the pen).

By serendipitous luck, I stumbled on these great reading comprehension apps for J, and they’ve been really good for him. They target specific areas of reading comprehension: fact v opinion, inferences, main ideas, etc. As I’m learning more and more with J, we have to teach him the pieces of the puzzle first before he can put it all together. I really love these apps for J.  I’ve learned through trial and error what apps work best, the most important being no “games.” No “cutesy characters” or bells and whistles. He loses all focus on the assignment and will start perseverating on the games. Second, no repetitive, predictable programing. He figures that out really quickly and starts to fixate on the patterns and then will perseverate on the program itself and not the content. Scholastic’s Read 180 is terrible for him because of the repetitive, predictable nature of it. He likes to get things wrong on purpose because the computer will talk back to him every time.

There is very little repetition in these apps. They will ask you to read the same passages or sentences again, but every time they ask you a different question about the passage. Which is great! Because J actually has to read the question and think about it instead of memorizing the answer after the first time. I love it from an English perspective because it shows you that you can read the same passage multiple times and get different things out of it every time. It was so funny to see the look on J’s face when he figured out that the same sentence could mean different things 🙂 Here are some of the screen shots of the various apps. We’re still at the beginner levels because that’s where he’s at comprehension-wise. But I know over the next couple of months he’ll figure it out pretty quickly. They might not be for every kid with autism, but they’ve been sure working well for J.

The apps are by Janine Toole (here). We started by the free downloads.

Here are some screen shots of each individual app:

WH2

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Fact Opinion

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Inference Ace

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Inference Clues

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Main Idea Sentences

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We don’t solely rely on the apps for reading practice, of course. We still read a novel together every day. I still print off the prepdog tests so he can practice a test on paper. Just one more tool in our arsenal of learning.

What reading apps or reading strategies do you like?

When Family Can Help You Settle Your Glitter

I feel like the summer is flying by and we’ll be starting school again in no time. I was talking to a co-worker last week and we both decided that the fourth of July is the halfway mark of summer. After that it’s just a fast downhill descent to the beginning of fall semester. That means J will be soon starting grade seven and I’m not ready for that. We’ve got so many things to learn and work on before that happens. We’ve been working on handwriting, but I want that to be at a better place before school starts. We’ve been working on reading comprehension but not as much as I’d like. I had grand plans for writing projects but we’ve only completed one. There’s still so much I want to go over with him.

With all my ambitions for academic rigor, I need to remember that living is part of learning. I keep telling myself this–that there are lessons to learn, opportunities outside of our daily drills of running, piano, handwriting, reading comprehension, and math. It’s really hard; I feel like we’ve been playing catch-up since the toddler years and to give myself permission to let that go for a few weeks is hard. There’s a lot of paranoia being a mom of an autistic child. Every wasted day is a wasted opportunity to rewire the brain. Every change in routine can undo weeks of work, so I repeat this mantra:

Living is learning too.

This week we headed to Kansas City, Missouri and Wichita, Kansas to visit our parents. We were lucky enough to have some siblings meet up with us. I brought along J’s piano books and some “homework” along the way. Sometimes we were able to fit most of his routine in, sometimes just a few things. We’re lucky that J has (mostly) gotten over his insistence on strict scheduling. He prefers to practice piano every day, but when we missed one day it wasn’t the end of the world. Some activities were great–the 10 hours at Worlds of Fun with late lunch and late dinner ended up working out just fine. The trip to the Royals stadium the next night went well initially–until J started thinking about our dog Fred and how much he missed him. By the 8th inning when J announced he was so tired and that ten o’clock was way past his bedtime. The workers of Kauffman stadium got to experience a full twelve year old autistic meltdown. It’s hard to know how to push when you’re out of town, out of your element.

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Enjoying the Royals Game (before the meltdown)

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Smoke from the Canadian wildfires made it as far south as Kansas City making for a hazy night.

A few days later we headed down to Wichita and visited more family. My sister’s kids were there as well and so W had a good time playing with them. They went to the trampoline park and the Nut House. Overall the whole trip has been a good experience.

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Fun with cousins at the trampoline park.

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The autism factor is interesting when you’re dealing with family. We live so far away from family that we’re lucky if we see them every six months,and within six months, J changes astronomically. Luckily, family is always willing to learn, support, and enforce the things you’re working on. I explained to everyone: “If he talks about exit signs or spelling words, just tell him that it’s inappropriate and redirect the conversation. He knows it’s inappropriate and he won’t be hurt if you call him on it. If you’re annoyed that he keeps talking on and on about the same thing, it’s okay to tell him to stop. The great thing with J is he’ll keep trying to interact with you until he figures out the right way.” That’s great thing about family is that they’ll back you up, even if they’re uncomfortable or unsure if they’re “doing it right” they’ll still try.

*Bonus points and a shout out to my sister Laura–one day J was having an anxiety attack (because he was overtired from the late fourth of July fireworks). She knew exactly what to do, she pulled him in close to her and started rubbing his back, ignoring all of his anxiety-filled gibberish, while I was able to grab the ipad for a calming app. Sometimes you feel so isolated in this autism journey, and when someone who isn’t by your side every day and doesn’t deal with autism every day is able to give you a hand, it makes all the world of difference.

*The “Settle Your Glitter” app available through iTunes is awesome. And it’s free. Which makes it even more awesome. You can check it out here:

https://itunes.apple.com/us/app/settle-your-glitter/id962467492?mt=8