buttoned up

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PINK - Striped Button

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“Let me tell you the secret that has led me to my goal: my strength lies solely in my tenacity”

~ Louis Pasteur

Buttoning, I think I mentioned recently, is a new, hard won skill. But like all new skills in our world, it’s not consistently available. It plays hide and seek and dissapears just when you need it most.

But once in a while, it’s in the void that we find greatness. It’s the times that ease is farthest from us that we find out who we are. And sometimes, something as simple as a button can help us define our character.

Brooke’s Hello Kitty pajamas have just three buttons down their front. They are oversized pink plastic numbers, just as you’d expect to find on children’s pj’s – made to enable the young wearer to button them fairly easily by themselves. Well, most young wearers of course.

Brooke took the pajamas from my hands. She laid the pants out on the floor, sat down in front of them, and pulled them up. As soon as she couldn’t pull anymore she stood back up to get them over her little bottom. She then tried to put the shirt on over her head, but it wan’t going to make it. She cried out as her head got momentarily stuck in the too-small hole.

I reached out to help, then pulled my hand back as I saw that she had found her way out. She managed to get the shirt off and she laid it out on the ground just as she had done with the pants. I watched her meticulously unbutton each of the three buttons, then pull the top on like a jacket. Without fanfare, she went to work on the bottom button.

She was tired and easily frustrated. It was right before bed, for goodness sake – the worst possible time to be working on something challenging. She began to cry. “Brooke,” I said as gently as I could. “Can Mama help you, honey?”

I didn’t want her to feel defeated. It was late at night. It wasn’t the time to be a hero.

She looked right at me (yup, right at me) and with all the conviction in the world she said, “NO.”

She twisted and turned that damned button. She yelled out in frustration.She pushed and pulled and contorted her little fingers until she got it halfway through the hole. And then the sucker slipped right out. She yelled out again.

The tears streamed down her face. “Honey, I know you want to do this yourself, but maybe we should try it tomorrow when it’s not so late,” I said, feeling completely impotent.

She cried harder, but didn’t make a move.

“Brooke,” Katie said softly. “Do you want us to stop looking at you?”

I hadn’t even thought of it. We were simply adding to the pressure, staring at her, looking for all intents and purposes like we might pounce at any time.

“Yeah, Katie. You would,” she answered.

We turned our bodies to make it clear that we were no longer watching her. And I did my best to conceal my furtive peeks.

Brooke turned herself around and faced the wall as she began to work again. I did my best to pretend to be engrossed in conversation with Katie. “Oh, yes, love, that sounds wonderful. I’m sure you’re going to love the trip to the arboretum.”

Once in a while I offered quiet praise. “I’m proud of you, honey. You’re doing so well.” She didn’t respond. I didn’t ask her to.

Nearly twenty minutes. It took my girl TWENTY GOD DAMNED MINUTES to button her PJs. And she stuck with it. For TWENTY MINUTES. She worked through her frustration and her tears and SHE DID IT. She would not give up.

I’ll never forget sitting across from our beloved neuropsych, Dr. I’dfollowthismantotheendsoftheearth about a year and a half ago. He was making an impassioned argument for addressing Brooke’s anxiety. We had been holding out, trying to avoid medication, exhausting every other option first. Part of the reason we were attracted to the doctor in the first place is that he’s not a guy who is big on meds. Unlike many other doctors that we encountered along the way, he doesn’t view himself as a giant Pez dispenser, indiscriminately handing out psycho pharmaceuticals like candy. Ask me sometime about the developmental pediatrician who once told me in a six minute phone call that she’d happily write a scrip for my daughter, whom she’d never met. She’d just like me to stop by with her for ten minutes or so just so she could see her first. It was the first and last time I ever spoke to the woman. But that’s just not Dr I’dfollowthismantotheendsoftheearth’s MO – so when he brought it up, we listened.

He made the very convincing case that the risks of letting Brooke’s anxiety run unchecked were far greater than the risks of the miniscule dose of medication that we would ultimately decide to give her. He actually said that he’d never felt more strongly about it with any child he’d seen to date. This ain’t his first rodeo. He’s seen a LOT of other children. He talked that day about the ‘hump of frustration.’ In order to learn anything new, he explained, we all have to push our way up and over the learning curve. And there’s stress involved in doing so. To take on anything new, one has to be able to make it through their frustration. At that time, Brooke wasn’t learning a whole lot of anything. She was screaming. And crying. And getting stuck over and over and over again in the vortex of her own anxiety.

I still worry about the medication. I think about the risks every single day. But – they gave her the ability to push her way over the first hump. And then another. And another. And along the way, she’s been able to pick up a whole lot of tools that had been previously out of reach. She’s learned how to calm herself down. She’s learned to ask for what she needs – breaks, walks, headphones, hugs. Once she began to understand that frustration was surmountable, there was nothing she couldn’t do.

Like buttoning herself into her PJs. All by herself, thank you very much. And the result – the pure, unmitigated joyful pride on that little tear and snot streaked face – was worth every bit of angst it took to get there.

You know, so often I feel like we project our own tenacity onto Brooke. Defiance, my friend M likes to call it. As in, ‘this kid defies any and all limitations.’ And she does. But she doesn’t always own it. Accomplishing a goal someone else sets just doesn’t have the same ring to it.

But as she stood there beaming in her buttoned up jammies, it couldn’t have been more clear – this one was ALL Brooke.

Ed note – many of you who wrote to me offline in response to this post suggested that we should be upping Brooke’s dosage. But, just as we did when we made the decision to medicate in the first place, we are exhausting other options first. After a long conversation with her developmental pediatrician, I feel very comfortable with our decision to hold off. I shared the same thoughts to her that I’d written into the post’s comments the night before -

after hearing from so many of (my friends) (both online and off) that (their) little (and not so little) ones are struggling right now too, i’ve come to believe that the time of year has an awful lot to do with the added stress on their already taxed systems.

the rapidly changing seasons, the screwy weather (at least here in the northeast where we’ve vacillated between 38 degrees and snow and 68 and sun all within 24 hours), the dramatically shorter days and far less time out of doors to get the jigglies out are conspiring to make life tougher for our kids.

add to that the fact that expectations are ramping up dramatically at school right now – the early days of getting to know classroom routines and reviewing old material are quickly giving way to getting down to business.

it’s not easy on kids who thrive on routine and who need to know what to expect.

She not only confirmed my reasoning, but told me that nearly every child she follows is having a tough time of it right now. She said the changes of season are always harder for our kids (we knew that, didn’t we?) and that anticipation of the holidays likely isn’t helping either.

“So, what do you want to do?” she asked.

I told her what we had done the night before. We had gone to a ball field after dinner. We played imaginary baseball and ran the bases. We played tag and we chased each other in and out of the dugout. We ran until the last of the light finally disappeared. And as I watched Brooke, I welled up with emotion. It was suddenly so obvious, watching her run. She’s fast, that kid. She has this funny little upright trot and her hair trails behind, looking like its trying to catch up with her. She was smiling. From ear to ear she smiled as her face cut through the wind. I said to Luau,”She’s FREE.”

It was good for ALL of us.

We are now on a mission to make up for the exercise she’s lost to the waning daylight hours. Yesterday at school her aide worked with the OT and they came up with a slew of exercises and activities for her. They ran outside twice yesterday. They took a break in the fitness room. They jumped over a balance beam and designed a stretch against the wall. It’s helping. A LOT. Her aide reported a great day.

And Mama’s breathing again.

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19 thoughts on “buttoned up

  1. Wow! Lot going on in this post. I mentioned just briefly in my post that “it’s that time of the year” for Jonathan too.

    We didn’t want to medicate him either. I never revisited several specialists when the first thing out of their mouth was medication. I was more willing to listen after they treated him awhile.

    It was our neuro-psych who convinced us to about reducing the level of anxiety. “Mrs. Howe, can you learn Spanish when your house is on fire? NO! You’re just thinking about surviving. It’s the same with Jonathan. He’s not learning the techniques you are trying to teach him because his house is on fire and he’s just trying to survive.” Pretty convincing argument for us. And the meds made an incredible difference. Even the school staff have noticed. We’ve definitely noticed at home.

  2. I dread this time of year. Dev’s eczema goes skitzo always which I expect due to my own eczema but this year I am getting the joys of tantrums, extra nakedness and the sleep issue is back. I’ve been up since 2 am. It’s real pretty here today. LOL Off to kick his booty out of bed.

    xoxoxxoxoxo

  3. Way to go Brooke. Last night buttons, today the world!

    We should create an email alert to all parents of and people with ASD. A sort of count down to fall so we aren’t always caught of guard and we can all get our sleep in while we can.

    This is without a doubt the hardest time of the year for us, and my son isn’t even in school yet! It is definitely the season, barometric pressure changes, daylight,etc. I discovered this year that a long walk right before bath and then bed is just the thing to help my little guy out. That cold fresh air is magic.

    It also helps that the pattern has re-occured enough times now in the past 5 years that I was prepared this year. For my son, the calm un-frazzled mother makes a world of difference. He is so sensitive to others emotions.

  4. I’m glad to hear more physical activity is working for Brooke. That seems to help here as well.

    Does Brooke like, have you ever tried, Yoga with her? Charlotte likes Yoga a lot. We have 2 kids Yoga DVDs and Charlotte really enjoys doing them. I have suggested that she do them at times when she seems like she needs *something* and getting outside isn’t an option. For us, it’s just something different in the repertoire to keep things fresh.

    http://www.gaiam.com/category/yoga-studio/yoga-instructors/marsha-wenig.do (we have the ABC one and the Silly to Calm one).

  5. corrie – i LOVE the metaphor of learning spanish with your house on fire! thank you so much for sharing it. i am adding that one to my own toolbox to help folks understand what it can feel like for our kids to try to learn while under seige.

    goodfountain – we’ve tried yoga, but brooke has a lot of difficulty with it. for one thing, it can get very confusing (and therefore frustrating) for her to try to figure out how to position her body to follow along. guidance often makes that worse.

    it’s also just hard for her to be still for any length of time. closed eyes, slow, calm breathing – not so much her thing.

    we’ve even done ‘story’ yoga with her favorite instructor in all the world, but it ‘s definitely not a stress reducer for her.

    it IS, however something that i will continue to revisit periodically. as we always see with our kids, it’s all about timing – things that don’t work at one point may very well work down the line once they’ve built up the foundation of some other skills!

  6. it looks great – and very similar to the ‘story’ yoga i was referring to. in it we moved from pose to pose ‘telling a story’ .. we’d make a bridge, then a butterfly to sit on the bridge, then a snake to talk to the butterfly, etc.

    but i will save the link and use it when we try again!

    thank you!!

  7. I love Corrie’s “house on fire” analogy. SOOOO accurate! Not sure how Nik would do w/the yoga right now —he’s still challenged to follow directions. But I like the idea of “work” as he totally needs that.

    The buttons and the sense of complete ownership. AWESOME. And I don’t mean that as in “Awesome, Dude!” I mean, it’s a huge, powerful, giant step for all of you. The perseverence on Brooke’s part, Katie’s insight (dang she’s smart!), and your letting go (good job, mama!). BIG STUFF.
    xoxo

  8. Tenacity is surely the trait handed down for generations in both sides of your family (and Luau’s). I still remember you as a toddler saying (quite constantly) “me do it”. Brooke’s got the gene for sure. …and bless that Katie for her insights!

    Love,
    Mom

  9. Such awesome tenacity — way to go, Brooke! And how beautifully perceptive of Katie to figure out how to take the pressure off.

    As if autumn weren’t tough enough already, we haven’t even hit the daylight-savings-switch. Argh…

  10. Wonderful! Buttons are HARD. Every once in awhile we have “NO! I want to do it” It’s so hard not to step in and help but the shine in their eyes after accomplishment is worth waiting any amount of time for. Katie’s one smart girl to recognize Brooke’s need to have some pressure taken off.

  11. I am amazed at her persistence, buttons are impossible here and there is zero interest in figuring it out. I’ve thought many times about medication for J. but I am really scared of it in general. I’m glad to hear that your experience has been a good one for Brooke.

  12. The “house on fire” analogy is spot on…and the exact reason we started meds with my son. I tell people that while OT, vision therapy and other interventions have made a big difference in his continued progress, the meds have made the single most dramatic difference.

    We, too, have been very cautious with upping the dosage. His doc just commented that she’s amazed that we’ve managed to keep it so low for so many years. But we do have to work hard to keep his activity levels up — for us swimming (soothing, repetitive laps) and cycling (long, leisurely rides), which he loves, help tremendously.

    As for the time of year, we’re also right with you. We actually have it written in his IEP to remind us that for the past three years, he’s started the school year strong out of the gate and then, once Halloween began approaching, taken a nosedive that lasted pretty much until after winter break. So far so good this year. But we’re pretty much holding our breath around here wondering if/when the bottom may drop out. Again.

  13. Forget about K for a minute. I’m amazed by the fact that you can write this post in a day AND work full time and be a mother. Yet again, I’m blown away by how much you can do, and, in so doing, how much you help all of us out. If I met you for a coffee, your post today would have been our conversation. Now…for B to hold it together like that AT THE END OF THE DAY?! Amazing. (And yes, my medication debate–same same! What if I do? But maybe worse…what if I don’t?) Let you know over another virtual latte. xo.

  14. Would you believe I got tears from this post? Totally with you. Just last night, Nigel came up to me after dinner, out of the blue, and said, “Mom, I really need some fresh air.” I don’t hear that a lot from him. It was dark and cold, but he knew what he needed. So he went out on the back deck and just breathed. And so did I.

    Yay for Brooke with the buttons. She knows what she needs too.

  15. The change is weather is what is doing this to my little man?!?! Jeez I am such a newbie, but at least I have an explanation for last night and the past few weeks. Brooke is such an inspiration. I hope that one day D will have the tenacity to stick with things rather than melt down and beg me to do them for him…which i do…every time…I am so blessed to have found your blog…

  16. shivon – i assure you, a year ago? nine months ago? even six months ago? no way in hell brooke would have worked on ANYTHING for twenty minutes. but baby step by baby step – one foot in front of the other – one day you find you’ve walked for miles.

    and this is what it’s all about, isn’t it? sharing information, coming together to puzzle it through .. so glad the post was helpful!!

  17. Katie is a genious! Turning around. I never would have thought of that, and yet, I’m the person who absolutely can’t type if someone is looking over my shoulder.

    I rejoice that Brooke is doing so well. She’s such a terrific kid.

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