The Well Child

Perfect 10 month Baby J with Steve at Lake Superior, Ontario.

At the two year well child visit, J threw an epic tantrum in the examination room. I was alternating rocking W’s car seat with my foot while trying to wrangle J at the same time. Our Illinois pediatrician slipped out of the examination room and returned quietly with a photocopied piece of paper that looked like it was taken from 10-year-old medical textbook. “It’s some information about tantrums,” she said with a tentative smile. “Read through it. It’ll give you some tips.”

J, just turned 2 years old. Urbana, Illinois.

I did a quick scan in the parking lot when I had the kids immobilized and secure in their car seats, both of them screaming at the top of their lungs. Words like “consistency,” “discipline,” “patience” and “staying firm” popped up all over the page. Words that had popped up in the books I read before J started speech therapy and early intervention. Tips that didn’t really apply to our situation because even though it would be another year or so until J would officially receive an autism diagnosis, I knew there was something fundamentally “different” with him. I HAD TRIED ALL OF THE TIPS ALL OF THE TODDLER PARENTING TIPS HAD SUGGESTED AND NONE OF IT WORKED. J wasn’t like “the other kids.” I had explained to the pediatrician that he wasn’t talking, that some of the developmental milestones he was now doing (like walking) took him a few extra months than his peers, but J’s pediatrician just brushed it off and said that some kids just develop a little slower than others.

I started dreading every single well child visit. It was a physical knock down battle to get J to stay in the room without a meltdown—without him freaking out from the moment we entered the room about immunizations. I had to hold his head firmly so he wouldn’t puncture an eardrum as the doctor checked his ears. I had to hold his body down while the doctor checked his toes (he has extreme sensory sensitivity on his feet–at one time Steve and I had to sneak in his room while he was asleep to trim his toenails). I tried explaining J’s autism to our new Kansas pediatrician, thinking she’d be a little more patient and would at least understand diagnosis, but she didn’t seem to really “know” what autism was either.

Even though I really like J and W’s pediatrician here in Fargo, I still dreaded this week’s well child visits. I set up W’s first, knowing that she would pass with “flying colors.” I was hoping it would give me a little courage for J’s visit the next day.

“Height and weight look good. You say that she’s at or above grade level at school; she says her hobbies are music, reading, and soccer. She’s good. Looking at her, I have hope for America’s future,” Dr. W said, finishing the checklist items with a smile. I know he was half-kidding when he said it. But it still kind of bothered me for some reason. She won the genetic lottery inheriting a body with very few hiccups. She wasn’t born with any learning disabilities or emotional disorders. It’s just how she came.

Dr. W has been the only pediatrician that has been patient and understanding about J’s autism. He got us a referral right away when we had some suspensions about seizures, he understands J’s coordination is bad because of his autism, so he’s more patient when he asks him to do things like jump or touch a toe, or other coordination tests. He’s even split J’s immunizations up so he doesn’t have to endure 4 needles at once. But out of all the people who work with J, I feel like the pediatrician has (and probably always will be) the person on the team that knows the least about autism and the least about J.

J and I practiced “getting a shot” every night before bed, timing his deep mindful belly breaths with the touch of a pencil tip. This amazing kid handled his shots and used his breathing like a pro! See? No tears!–this is post-shots!

J doesn’t meet the “hope of America’s future” requirements. During J’s well child visit, I explained to Dr. W the losing battle we’ve been fighting with the eczema around his eyes. He’s had it since November, and we went to the walk-in in December. I explain the finger picking issue and medications for J’s anxiety and ADHD that Dr. R and I have been visiting about every 3 months for years. I show him J’s ankle foot orthotics (AFOs) for his severe overpronation (not autism related). Dr W. made the referral to the specialist during our visit last year but he hadn’t seen them yet. I explained his weak muscle tension in his one arm and that the OT at school is working on that with him. In the middle of rattling off all of J’s ailments, and before I could prep J or remind Dr. W of J’s ear sensitivity, I watch Dr. W insert the otoscope in J’s ear, just as J takes a big, deep belly breath to stay calm.

“J, you’re doing so awesome!” I say excitedly. I wanted to give Dr. W my two minute replay of nightly mindfulness practice and how we’ve been using that as an extra way of helping the anxiety, and Dr. R’s thoughts about our new strategy, but by watching Dr. W’s clinical efficiency I know that it’s not at the top of his observation list. He’s checking out his rate of growth, encouraging preventative healthcare, and testing the basics of J’s human development. In-the-moment anxiety management isn’t on his radar. He’s interested in a very tiny piece of the overall J picture.

I feel like everyone else on J’s team: his psychiatrist, his child psychologist, his teachers, his paras, his occupational therapist, his speech therapist would have all seen how big that moment was. They would have been ecstatic to see how J used his deep breathing and took his flu vaccine and booster WITHOUT KICKING, BITING, SCREAMING, OR TEARS. Dr. W only sees J for 40 minutes once a year. He doesn’t really know J. It’s not really his job. Pediatricians aren’t specialists in autism, and that’s okay. I know this, but I still hate going to the pediatrician’s office. Because all of the poking and prodding usually sends J and all of the other autistic kids in the world into a frenzied mess. And that’s all the pediatrician—that primary medical contact—ever sees. That’s what autism looks like to them.

Steve, Me and J (7 months) Utah

It still haunts me when I think of J’s well baby visits, neither his pediatrician nor I knew that inside that 90th percentile head of his there was a brain that was wired so very, very differently from the kids he was being sized up against on the development charts. That inside that body that registered at 90th percentile height and weight there were muscles that didn’t communicate with his brain like the other kids. When he was an infant he was perfect. No one knew anything different. All of those measurements and developmental milestones fooled us for almost two years.

Because there’s so much more to a well child than just inches and pounds.

 

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 😉